24 May 2015

Ichthyosis Awareness Month -Callie’s Story: “My skin is on me…I am not my skin”.

Callie grew up in a small town in Canada. A blessing in disguise, as she was born with Lamellar Ichthyosis. Everyone knew who she was, there were never any questions regarding her skin. Now a university student, she has ventured out to bigger cities and has to answer the endless questions.

A 22 year old girl, whose biggest challenge is not sweating at the gym, is navigating life with her boyfriend. She is an appearance activist, who blogs at Flaws Make Life Interesting.

Meet Callie!

"Hey there, my name is Callie, and I was born with Lamellar Ichthyosis.

Oh, where to start? I was born in a small town in Canada, where we experience the harshest of winters (-50 Celsius is a real thing here), and scorching hot summers. As far as my family and I are aware, there is no history of ichthyosis on either sides of the family. I always used to giggle when dermatologists explained that there was the “one in four chance” of my parents having a baby with ichthyosis…guess what? I was baby #4!

I grew up in a very small town (about 2,500 people), which I always considered a blessing in disguise. Everyone knew who I was; there was no questions to be asked. Growing up, I can only recall one or two occasions where I was bullied because of my skin. I was just a regular kid. However, that did not prepare me for what would happen when I left town, and ventured into the cities. It was seemingly endless amounts of mental breakdowns over the old age question, “were you burnt?” 

I soon realized that, despite what I thought, the world didn’t revolve around me, or my skin. People are mean, people ask things at inappropriate times, and people are sometimes downright ignorant. I had a choice, I could spend my life hiding, or I could go out and live. 9 times out of 10, their comments roll off my back now…however there is the odd time that I allow myself to get upset.

Surprisingly enough, the biggest challenge I have faced in my life is the fact that I don’t sweat. It really puts a damper on my mood when I’m getting a good workout in at the gym. Other than that, I am a normal 22 year old woman. I am currently completing my Bachelor of Commerce Degree, have obtained a Business Administration Diploma, currently hold the position of President of my college’s students’ association, keep excellent marks (currently on the honor roll, woo hoo!), will be pursuing a career in financial services, and most importantly (to me) I have an amazing boyfriend who I am getting prepared to start a life with. 

Let’s talk about him for a moment, because I love to talk about him. I honest to God thought I was going to die alone. It was just something I had accepted. Then this kid came crashing into my life one day. He is protective, he doesn’t ask questions…he just…is okay with it. My skin has never been an issue between us…not even when we wake up with bed sheets covered in skin. He asked me once when I attempted to sweep them off in embarrassment, “if I don’t care about it, why do you?” He makes me see the world in better form. He made me realize that I am beautiful, I am worthy, and most of all, I am capable of being loved. 

Life is good friends, even if sometimes it feels like the world is out to get you. Something I tell myself each morning when I am feeling down is “my skin is on me…I am not my skin”. I won’t let it control me. I won’t let it hold me back. If you have ichthyosis, neither should you. "

May is Ichthyosis Awareness Month - I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.

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This post was edited by Clare who blogs at The Life of Clare.

23 May 2015

Ichthyosis Awareness Month: Anna and Genevieve's story: "But most days are our silver linings."

Anna is such an amazing mother - I really admire the way she discusses issues about Ichthyosis. She has told me of the judgment she has received about her daughter's skin because people just don't understand Ichthyosis. We've become great friends online. 

Her daughter Genevieve has Epidermolytic Hyperkeratosis.

Meet Anna and Genevieve. 

"Hello from the wonderful state of Minnesota! My name is Anna, and I am the mother to an amazing 6 year old girl named Genevieve. She is your average 6 year old girl. She loves Taylor Swift, dancing, playing dress up, riding her bike and just having a good time. She is funny, always happy, and she is super smart (making honor roll the entire year of Kindergarten even!). She loves to build forts for her and her little brother to climb around and pretend inside, and has a very active imagination. Just like every other little girl right now, she loves Disney Frozen and wants to be just like Elsa. There is one thing that people tend to notice first about her though, her skin. Genevieve was born with Ichthyosis. The reason I waited to tell you that though, is because that is just a tiny little piece of who she is. She is so much more than her skin condition diagnosis.

Genevieve was diagnosed at 6 days old with Epidermolytic Hyperkeratosis. This causes her skin to reproduce roughly 300x faster than normal skin. It seems like no matter how much we exfoliate, it is never enough to keep it all to a minimum. We have been told that the amount of skin she sheds overnight, is equivalent to the amount of skin a person with normal skin will shed in 2 weeks. She has also PPK involvement, causing her palms and soles to be very thick. With the thickness comes pain, lots of it. Genevieve’s body cannot sweat enough to cool her body temperature, due to all the buildup of excess skin… causing her to overheat very easily. The skin on her scalp can grow super thick and basically become like a glue substance, gluing her hair to her head. Or even flaking off, and becoming stuck in her hair.

Almost every single day, Ichthyosis presents us with a new challenge with her skin condition, whether it is overheating, or a blister we can’t figure out why it formed, or if we exfoliated for too long in one spot.
Every day is different from the day before. Some days we are sad about having a child with Ichthyosis, some days just plain angry. But most days, are our silver linings. When you see her smile, when you see her happy and playing and living like any other 6 year old, ichthyosis becomes so minor in our lives. She is here with us. She is happy. She is healthy. She is amazing. The extra-long baths, special shampoos and lotion hand prints all over our house have easily become our normal. Ichthyosis is just another normal. When a challenge arises, we face it head on and take care of it, without a second thought. When she was first diagnosed, we were given the advice to just continue our lives as we would if she had healthy skin. So we try our best to always remember that Genevieve has ichthyosis…
Ichthyosis does not have her."

May is Ichthyosis Awareness Month - I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.

Be social: follow me on Facebook, Twitter and Instagram

Ichthyosis Awareness Month - Catherine and Alfie's story: "The online community have been a fantastic source of information and support to us when we would have been so lost."

Today Catherine writes about her son Alfie, who turns two years old today! Happy birthday Alfie! He has Bullous Ichthyosis (also known as EHK). They live in the UK. Catherine explains the way Ichthyosis impacts on daily life, and how difficult it can be for people without the condition to understand the extent of it. She also writes about the doctors' low expectations of people with Ichthyosis - and this proves how important it is to share our stories. I hope they read them.

Meet Catherine and Alfie. 

On 22nd May 2013 I went into labour. Having only just moved house that week, I hadn’t seen my new midwife or done a hospital visit– my due date wasn’t for another month. I went straight to hospital and at 5:15am, 9 hours later, our little boy Alfie arrived in the world. This is where our ichthyosis story started.
As soon as Alfie was born, it was apparent that there was something that wasn’t right. He had a small patch of red skin on his chest that looked like a blister that had burst and peeled. After the midwives had rubbed him down, more skin started to peel away from his body. We were already in a state of shock from the early arrival of our son but then suddenly there were lots of people in the room discussing our child and we had no idea what was going on. Alfie was quickly transferred to the neonatal ward and we didn’t see him for a couple of hours; that was agonising.

When we finally got to see Alfie, he was in a humidified incubator wearing a nappy that looked too big for his tiny body and was surrounded by machines. It was a shock to see him, he was bright red, his skin had peeled all over, he looked like someone had poured boiling water all over him. It was heartbreaking. We weren’t allowed to touch him with our bare hands, we had to change nappies and bottle feed him wearing gloves while he was still in his incubator. The doctor told us that they suspected ichthyosis but were unsure. One thing the doctor did say was that Alfie would not have much of a life! Words can’t describe how we felt at that point.

We were transferred to a different hospital and an initial diagnosis of Bullous Ichthyosis (EHK/EI) was given. We were given a step by step skincare routine to follow – literally a set of instructions! We spent pretty much 24 hours a day on the ward with Alfie for 6 days, bathing, applying 50:50 paraffin ointment and wrapping his tiny body in bandages. We were told that we could take him home on day 7; his skin was still really red, fragile and had started to blister. Specialist nurses came out to see us and we were shown exactly how to care for Alfie, what creams to apply, how to burst blisters and how to apply dressings – things you don’t expect to have to do to your newborn baby! Our nurse specialist introduced us to the Ichthyosis Support Group (ISG).
I joined the ISG, got in contact with the ichthyosis community online, read every possible article I could find and learned as much as I could about Alfie’s condition. The ISG and online community have been a fantastic source of information and support to us when we would have been so lost. As much as people on the outside try to understand Alfie’s condition, the only people that can really know what we go through are the individuals and families affected by ichthyosis. The support that comes from the ISG and the other families is invaluable.
Alfie is now 24 months old, he’s a cheeky monkey, a chatterbox, a superstar. The last 24 months have been tough at times; we’ve had to deal with so many new things alongside the ‘normal’ learning curve that is becoming a parent. We’ve been to more hospital appointments, had more prescriptions and dealt with so many medical professionals than we imagined was possible. We have a cupboard full of creams, bandages and dressings, we find our own ways of doing basic tasks like changing nappies, swimming, getting dressed. There are things that people don’t realise are part of our life like having grease everywhere, the constant washing, the amount of appointments we have, how long the bath/cream routine takes, how much skin sheds around the house and how we often get comments (rude or not) from complete strangers. Ichthyosis is part of who Alfie is though; he will find his own way of dealing with his condition, he will have good days and bad days along the way. Although ichthyosis is part of who Alfie is, it does not define him and this is one of the most important lessons that we can teach him.

May is Ichthyosis Awareness Month - I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.

Be social: follow me on Facebook, Twitter and Instagram.

22 May 2015

Ichthyosis Awareness Month - Remembering Thomas. Today he would have been one year old.

This is the saddest post I've had to edit and publish. Today is Thomas's birthday. He would be one year old. He passed away from infections resulting from his Ichthyosis (KID Syndrome) in December, aged six and a half months. I wrote about Thomas before I even knew his name, urging people to remember that severe skin conditions are not just cosmetic. I remember reading about the news of his death - the Ichthyosis community is so small - and feeling so sad for his parents. I got in touch with his mum Ashlee soon after. 

This beautiful baby boy is so missed and loved by his parents. I see photos of them decorating his grave - and despite the sadness, celebrating his life. They are so strong and so compassionate. 

I asked Ashlee if I could honour Thomas by publishing her story. She agreed - committed to raising further awareness about Ichthyosis in the midst of her grief. I know how difficult it was for her to write it. When I first read her story, I saw that Thomas's birthday fell in May, and so I asked her if I could publish it today. She said yes. 

A few weeks ago Ashlee and her husband Buddy announced some wonderful news - they're expecting a baby! I am so happy for them, and I hope the pregnancy goes well and that their new baby is born healthy.

Meet Ashlee, and remember Thomas. I hope you'll leave a comment of love for the family. 

"It was about 2:55 in the morning on Thursday, May 22, 2014, when mine and Buddy’s world was completely turned upside down and inside out. We had only been in bed for about 20 minutes when my WATER BROKE. I started screaming. I was scared to death. It was too early. Thomas wasn’t supposed to arrive until July 2. “What are we going to do?” I kept asking hysterically. Buddy tried to calm me down telling me that everything is going to be ok. We arrived at the hospital around 4:30 a.m. and Thomas was born at 10:36 a.m. He weighed 4 lbs. 12 oz. and measured 17 in. long. He was perfect! He had the most beautiful little lips that I could not wait to kiss! Sadly, he was taken from my arms just minutes after he was born to be transported to the NICU (Neonatal Intensive Care Unit) due to being so small.

About an hour after Thomas was born one of the doctors visited Buddy and me in our room. He first informed us that Thomas would have to stay in the NICU at least 2-4 weeks, possibly until his due date to gain weight and learn how to eat. When Thomas was born, he was covered in vernix, a white substance that covers babies’ skin when they are in the womb. Since he was born so early, Thomas had a good bit all over his body including his head and face. The doctor informed us that the covering couldn’t be cleaned off of Thomas’ head because it was his skin… Thomas has Ichthyosis. “Ichthy what? Can you please repeat that and maybe spell it for me?” Buddy and I had never heard of it. Ichthyosis is a rare genetic skin disorder characterized by dry, scaling skin that may be thickened or very thin. The doctor informed us that a geneticist was on his way to look at Thomas and confirm the diagnosis. He also informed us that Thomas was born with hand contractors, where his fingers bend towards his palm and cannot be fully straightened.
WOW! After just 20 minutes of sleep, an epidural, birthing our baby, and then finding out our baby had Ichthyosis and hand contractors, we were, we were… well there are no words that could describe how we felt.

We were then able to go back to the NICU to see our precious baby. The doctor, geneticist and hospital dermatologist met us there. They spent several minutes observing Thomas from head to toe. Thomas was born with no hair or eyebrows. He did have a row of eye lashes that only lasted a day or two. The doctors pointed out that Thomas’ finger nails were different. After deep observation, the three doctors confirmed that Thomas has Ichthyosis. The geneticist informed us that there are many different types of Ichthyosis ranging from very mild to very severe. He recommended we wait and see a pediatric dermatologist before having testing done. He said she could probably look at Thomas and be able to pinpoint the tests to proceed with. We were going to have to wait a month after Thomas was discharged from the hospital to meet with the dermatologist. They also said the skin condition could be related to a syndrome; and that sometimes it is associated with hearing loss. We were left in tears and had so many questions. The geneticist warned us to be careful when Googling Ichthyosis because there are so many different types and Thomas may not fall into the categories we find. Buddy and I spent several hours racking our brains trying to figure out who in our families might have Ichthyosis because it is hereditary and neither of us had it so we assumed it was a recessive gene. We spent the evening loving on our precious gift from God.
Thomas spent 20 days in the NICU. He had to sustain his weight and learn how to take a bottle. When we brought Thomas home from the NICU, the flood of doctor’s visits began starting with an appointment to see an audiologist because Thomas referred in both ears during his hearing screening at the hospital. The skin in Thomas’ ears became thicker due to the skin condition. He also had tiny ear canals, so we were praying those were the reasons he referred. The audiologist was not able to perform the tests effectively due to the skin build-up in his ears and small ear canals. She then referred us to an ENT who cleaned Thomas’ ears out and recommended we wait a couple of months before testing again to give Thomas some time to grow.
We then met with a physical therapist and an orthopedist for Thomas’ hands. We were given stretches to do with his hands, arms and legs. The orthopedist said Thomas would most likely have to have surgery on his thumbs because he had trigger thumbs and they rarely correct on their own. The physical therapist got us set up with Hand in Hand, an early intervention program. An occupational therapist visited our home twice a month to work with Thomas.
Then, the appointment we had all been waiting for… dermatology. We were told by the doctors at the hospital that Thomas was setup to see the best pediatric dermatologist in the state so we were very hopeful she could help us. We spent a great deal of time explaining to her everything we knew about Thomas up to that point. After examining him, she said she strongly believed Thomas had KID Syndrome but that we would do blood work to confirm. Buddy acted like he knew exactly what she was talking about and I was completely puzzled. She then explained that the “D” in KID was deafness. “Deafness?” Tears started to puddle in my eyes. She went on to explain that the “K” is for Keratitis, eye problems. And, the “I” is Ichthyosis, which we knew he had. Our doctor’s nurse brought me a tissue as I was having a really hard time keeping it together. “So, our baby is deaf and blind,” I kept asking Buddy as we walked to the car. He tried to calm me down and explain everything to me. He had already done research on KID Syndrome so he was familiar with it but didn’t want to tell me because he was afraid I would worry, and he also didn’t believe Thomas had it because it is EXTREMELY rare (only 100 cases reported). I was devastated. We decided we would only tell our parents and siblings until his diagnosis was confirmed.

The week of July 20, started the worst week of mine and Buddy’s lives, well we thought. That Sunday was our very first Sunday to attend church as a family. But Thomas woke up with a rash all over his body and after showing him to a couple of people at church, Buddy and I decided to take him to Children’s After Hours, who decided to send us to the ER because Thomas had a fever. After spending almost all day in the ER, the doctors sent us home because Thomas was no longer running a fever and it didn’t seem to be a serious rash. The next day we saw our pediatrician. Mid-July Thomas started to develop reflux. It got so bad that he was vomiting his entire bottle. I can’t explain the pain I felt watching him. He also started to lose weight. Our pediatrician scheduled Thomas for an Upper GI test the next day. The test showed that Thomas was aspirating but we didn’t know if it was primary or when he refluxed. So we were then scheduled for a swallow study for that Friday. On Wednesday, we saw the ophthalmologist who was very concerned about Thomas’ eyes and said Thomas wasn’t devoting his attention toward eye development that he was just trying to survive. I was crushed and felt completely helpless. I asked Buddy over and over that week, “What are we going to do?” All of these doctors keep telling us that Thomas just needs to grow, Thomas just needs to grow, but he keeps vomiting his feedings and even stopped eating because the reflux burned so bad. We had the swallow study done and Thomas aspirated EVERY TIME. The speech therapists said it was no longer safe for Thomas to eat by mouth. I was scared to death. He was immediately admitted to Children’s Hospital and received IV fluids. Buddy and I were nervous yet relieved… we believed we were on a better path to get Thomas the nutrition he needed to gain weight. The doctors believed it would be best for Thomas to get a g-tube put in. During his surgery, the ENT and audiologist were able to perform the hearing screenings again, which confirmed that Thomas had at least severe hearing loss, most likely profound.

A few weeks later we received the results from Thomas’ blood work that revealed that he did indeed have KID Syndrome. We weren’t surprised as many factors pointed to this rare condition. The results stated that most likely it was a spontaneous genetic mutation. We immediately started a “Heal Thomas” Campaign asking all of our family and friends to pray that God would completely heal Thomas here on Earth.

It wasn’t until mid-September that Thomas started to have major skin problems. The skin began to come off anywhere there was a skin fold – under his arms and neck, behind his knees, and especially in his diaper area. Those areas started to get very raw and even had discharge coming from them. We reached out to our pediatrician and wound care nurses and they had us try several topical treatments, but they didn’t work. The first weekend in October Thomas wasn’t himself. He cried all weekend, he started running a fever and his skin looked really red, even a little purplish. He had a follow-up appointment with the surgeon that put in his g-tube on Monday morning and as soon as he looked at Thomas he felt very confident he had an infection. The week before, Thomas had a swab of the raw skin areas tested at our dermatologist’s office so the surgeon followed-up with her and we discovered that Thomas had a pseudomonas skin infection. We were immediately admitted to the hospital and Thomas was started on IV antibiotics. The doctors also started him on IV fluids.

The next day, we were moved to the Special Care Unit (SCU), which is a step-down from ICU. Thomas had to receive his first blood transfusion (with several more to follow). His skin also began to swell from the IV fluids. It swelled so much that his skin cracked, peeled too soon and never recovered. Thomas’ diaper area worsened as the antibiotics gave him diarrhea. The wound care nurses and our dermatologist had us try several different creams but nothing worked. Our dermatologist had Thomas start a light therapy treatment to try to help improve his skin. We weren’t able to use it very long before Thomas became extremely sick.

We were admitted to the hospital on Ocober 6. There were several times we thought we were going to get to go home, but Thomas would get through about 10 days of a 14-day antibiotic and the bacteria would become resistant to it. He would then have to be put on a different 14-day antibiotic and the same thing would happen over and over again. We had so many ups and downs. One day we would receive bad news, and then the next day Thomas would be better. Our emotions were all over the place on top of receiving no sleep. We took care of Thomas while in the hospital and never left his side.

Towards the end of November, our doctors put Thomas on TPN (Total Parenteral Nutrition) to try to help with the diarrhea. We also started using a new ointment on his skin. We, along with the doctors, began noticing improvement, especially in his diaper area. We were all very hopeful and Buddy and I thought after almost two months we were finally going to be able to go home. During the night on Friday, November 28, Thomas scared us with a cough. It was only one time but enough to cause us to jump up and run check on him. The next evening, the doctors were doing a chest X-ray on him, and by Sunday, Thomas had to be put on oxygen. He never had to have oxygen before, even when he was born so small. We knew this must be a totally different issue from his skin. A Pediatric Intensive Care Unit (PICU) doctor came to observe Thomas Sunday evening and wanted to have him moved to the PICU right then, but said we could hold off for the time being. Our doctors performed several tests throughout the day on Monday. By Monday afternoon, Thomas was breathing over 90 breaths a minute. We were still allowed to keep him in the SCU. We also found out that evening that Thomas had his first blood infection, Candida (yeast). We were told during the day on Tuesday that Thomas had Coronavirus, which is a respiratory virus. By Wednesday, Thomas started to tire out. We were extremely worried. The PICU doctor came and observed Thomas again and said if we wanted to give him any chance to live, he was going to have to be intubated. We were completely devastated and worried. However, we were not going to give up, and we didn’t lose hope.

Thomas was moved to the PICU and placed on a ventilator. We had so many people praying for him. We knew it was going to take God completely healing Thomas; and we prayed that He would heal Thomas on Earth.

Thomas remained stable on Thursday. The situation didn’t look good, but he was stable. We were still so hopeful. Late that evening we found out he had a second blood infection, this time it was staph. That definitely brought us down, but we weren’t going to lose hope. Thomas did have thick skin on his head, but the rest of his body was becoming raw. Even his eye lids started to break apart and bleed. On Friday morning we woke up to the worst nightmare you could ever imagine. Thomas’ doctor informed us that he wasn’t going to make it. She said his chest X-ray was worse, and his blood gases kept getting worse and worse as well. The last thing you ever want to hear is that your baby is going to die. It’s the absolute worst feeling in the world, it’s gut wrenching. Actually, it’s a feeling that’s indescribable. I had physical pain I hurt so badly. Thomas passed away in my arms at 4:26 p.m. on Friday afternoon, December 5.

We had prayed for God to heal Thomas and that’s exactly what He did. We definitely wanted it to be here on Earth, but God had other plans and now Thomas will never endure pain or suffering ever again. Buddy and I are very strong in our faith and we have hope that we will see Thomas again one day. Thomas may have only lived six and a half months on Earth, but in his short little life, he touched so many lives. We miss him more than anything and can’t wait to be with him.
We will never understand KID Syndrome but we want to do everything we can to create awareness about it as well as Ichthyosis. Our thoughts and prayers are continuously with those who battle this condition every day."

If you need support after the death of your child, contact: SANDS, Bears of Hope, Sids and Kids, Heartfelt, The Stillbirth Foundation and Miracle Babies in Australia. Support for American parents can be found here. The Compassionate Friends support British parents.

May is Ichthyosis Awareness Month - I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here

Be social: follow me on Facebook, Twitter and Instagram.

21 May 2015

Ichthyosis Awareness Month - Kelsey's story: "I remember telling my younger sister once that I was part dinosaur."

Today Kelsey tells her story. I love the perspective and humour Lamellar Ichthyosis has given her. And similar to me, she's proved doctors wrong, showing them she can do so much more than they expected of her. 

Meet Kelsey. 

"Hi, I am Kelsey and I am fromTexas. I am a junior in college and enjoy drinking Starbucks coffee, listening to Mumford & Sons, and painting when I get the chance. I am 21 years old and have lamellar ichthyosis. In some ways I believe that having ichthyosis has been a blessing in my life. Although, living with this condition I deal with things that other people may never experience such as; 2 hour long baths or constant battles with skin infections, I believe my unique skin has made me an even stronger person today and over the years I have learned to embrace the skin I am in.

When I was young my parents were the bomb (and still are I might add). They would help me scrub my skin in the bath and would graciously endure my screaming as they helped to lotion me up afterward. The lotion is an Aquaphor with lactic acid compound, so it would often burn any spot on my skin that was raw or irritated. My parents are awesome. They never held me back from anything I wanted to do. They believed in me whole-heartedly. I was in dance, volleyball, gymnastics, Tae Kwon do, and even t-ball. There were many things I did not really understand or like to do to care for my skin when I was younger. I remember being a fairly stubborn kid and was never afraid to voice my opinion to others when it came to things I was not fond of. The memory of having to wear clothes drenched in water while playing t-ball or an umbrella hat on the playground outside are just some of the things that I remember hating having to do. At the time these things seemed like such a big deal to me, a burden when I was just trying to have fun and be a kid. I was annoyed by the extra care that I had to give to my skin that other people did not, but looking back on it these are some of the things that have made me realize how precious life is. 

I think that having ichthyosis has allowed me to look at life in a more open way. It has made me more appreciative of the little things and has taught me to be understanding of everyone and the circumstances that they come from. Even though there were things I did not enjoy having to do for my skin when I was younger I learned to have a sense of humor because of them. I remember telling my younger sister once that I was part dinosaur. After some skepticism she finally agreed with me when I showed her the thick patches of skin on my legs. I felt so accomplished and clever that I had pulled one over on her. Over the years I have learned to see my skin in a positive light and I give all my thanks to my family who has always been supportive of me.

As I have gotten older my ichthyosis has improved a lot and I am very thankful for that. I no longer look at my skin as a burden and just see it as a part of who I am. Caring for my skin has become a routine and something that I don’t think twice about. Although I still know that 100 degree weather will never be for me, I am so grateful for all the things that I can do that the doctors said I would never be able to.
Though at times I do still get a little self-conscious when my hands peel or my face is dry, my skin is something that makes me unique. I believe that in life, everyone has something they have to deal with it and that’s okay. For me it is my skin, but you never know what that thing might be for someone else. Next semester I will be going into my final year of college and I know it is going to be an exciting and scary time in my life. Even though I am not exactly sure what I want to do after I finish school I am ready to be able to feed my passion of working with children. My lamellar ichthyosis is something I believe has helped to shape me into the person I am today and I’m happy to know that I am a stronger person because of the skin I am in. "

May is Ichthyosis Awareness Month - I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.

Be social: follow me on Facebook, Twitter and Instagram.

20 May 2015

Ichthyosis Awareness Month: Daniel's adoption story.

Little Daniel has Harlequin Ichthyosis. When he was born, his birth mother grieved over giving birth to another child affected by Ichthyosis. Daniel's doctors were doing the best they could to save his life, and to find him a family who could care for him. Nicole and Mark gave Daniel a new chance at life. They were willing to help him, despite knowing very little about Ichthyosis. Read their adoption story. It's so beautiful. 

They have received some wonderful support from adults and facilities affected by Ichthyosis.

Meet Daniel and his parents Nicole and Mark. Two amazing people who has given a little boy the best chance at life.

"Before we even knew he existed, there was…

-a newborn baby boy in California, named only “Baby Boy Z”, struggling to survive the first days of life with harlequin ichthyosis.

-a mother, overwhelmed with pain and grief as she recalled her daughter, born many years ago in China, who lived only a few difficult days, thinking, “Why is this happening again?”

-a father, halfway around the world in his home country, unable to comfort his grieving wife, unable to hold his newborn son.

-a medical team, working around the clock to help this baby boy survive, feeding him, treating him with aggressive antibiotics when sepsis made his prospects look dim.

-a hospital social worker, realizing that this baby will need a new family (if he survives the first few weeks), but doubtful that such a family can be found. She feared he would live, and die, in the foster care system.

-And there was Mark and me, across the country in Pennsylvania, recently finished with our mountains of special needs adoption paperwork, clueless that our son (our SON!!) had been born. Then one day we saw a Facebook post about a baby with harlequin ichthyosis who needed a forever family, we researched the condition, we prayed for wisdom, and we sent over our home study packet. A few days later, as Mark and I were jumping around singing silly Bible School songs for a roomful of hyper children, his cell phone was lighting up with calls from California. I was on a plane to Los Angeles 18 hours later.

On Baby Boy Z’s one-month birthday, after a harrowing rush-hour cab ride from the airport, I walked nervously down the hospital hallway, bursting with excitement at the thought of meeting my new son. I heard little whispers of, “She’s here! The mom from Pennsylvania…she’s here!” as I passed the nurses’ station. Someone told me to don a gown and gloves, and I smiled awkwardly at the two Chinese ladies in the hospital room, wondering which one was my son’s first mom. I peered over the edge of the hospital crib and cried as I took in my beautiful baby boy dressed only in a diaper. He was covered in dark patches of thick skin, sleeping with his eyes open, and he was making those familiar baby squeaks as he stretched. Over the next week, I sat in on all the “rounds”, learned about his medical care, signed several stacks of paperwork, and began the process of bonding with my baby boy. We decided on his name and the nurse changed the nametag on the crib from “Baby Boy Z…” to “Daniel”. Daniel means “God is my judge”, a sentiment that will be useful for him as he grows up with ichthyosis.
As of this writing, Daniel is a healthy nine-month-old, making strides in his development (rolling over now, and sitting like a pro!) and entertaining us with his cute and silly personality. We have developed a “new normal”, integrating Daniel’s feedings, skin care, and doctor appointments into the family routine. There have been a few hospitalizations, but overall, Daniel is surprisingly healthy. We have been surrounded by love and support from our local medical community, our family, and our church family (who came together to fund Daniel‘s entire adoption!!).

We consider it an honor and a privilege to have been chosen for Daniel, and we are so grateful that he was chosen for us."

May is Ichthyosis Awareness Month - I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.

Be social: follow me on Facebook, Twitter and Instagram.

19 May 2015

Ichthyosis Awareness Month - Casey's story: " I love to answer questions, when asked respectfully and with kindness."

This morning, Casey's mum Kimberly sent me a message asking if I wanted to share Casey's story. Of course I wanted to. What a beautiful girl, and what a powerful story. I really admire parents who come forward to say how tiring and 'rage provoking' whispers, stares and pointed fingers can be. A little girl - and adult even - should not have to put up with this. Get to know someone before making assumptions and intimidating them with stares and whispers. As Kimberly writes, " If you happen to have the pleasure of seeing or meeting her, say Hello. I love to answer questions, when asked respectfully and with kindness." And that goes for all of us. 

Casey is seven years old, lives in Canada and has Ichthyosis form Erythroderma. A big thanks to her Mum for asking me to publish this. 

Meet Casey.

"On February 17th, 2008 - we started a brand new chapter of our lives when our youngest daughter was born - Casey. She was born a bright, lively, beautiful little baby girl who just happened to have been born with ichthyosis - a congenital condition primarily affecting the skin. It is an exceedingly raredisorder that can have many complications.

It is so rare, there is very little awareness of the disease. May is Ichthyosis Awareness Month - and through education, the ichthyosis community hopes to increase awareness. Awareness will hopefully reduce the challenges people living with ichthyosis face.

Imagine being a beautiful little girl, with a smile that lights up a room, with a laugh that is so infectious, you can't help but join in - and imagine that child and how she would feel when another child says they hate her because of her skin. Just think about it. And imagine that child having to hear about it repeatedly from yet another child. It can have devastating effects.

This is what our Casey had to endure just last year at the age of 6.

As a parent, you strive to do the best for your child. We educate everyone who will listen. We prepared a presentation for the staff/teachers at the school she would be attending and with the encouragement of the school administration, presented it to parents of children who would be attending school with Casey. For the most part, it went very well. People were appreciative of the information.

There unfortunately continues to be people - adults and children - who blatantly stare at our beautiful daughter. There are whispers and pointed fingers. It can be rage-provoking, if I'm being honest. But mostly, we try to educate and increase awareness.

We've been doing this since her birth. When she was born, there was some debate in the delivery room of why she looked the way she did - and it was I who gave her skin condition the name, because I was familiar. My mother also lived with ichthyosis. Then came the specialist appointments - dermatologists, geneticists, ENT specialists, opthalmologist. And with a disease this rare, you find yourself doing a lot of research, and often educating these specialists. I was fortunate in being a registered nurse - it allowed me to understand the medial research I read and continued to search for.

When I found Foundation for Ichthyosis & Related Skin Types, Inc., it was a godsend. It allowed us to get advice, support and medical expertise. If you have an interest, it's a great place to go. We now have an "Ichthyosis Family".

Our Casey is one of the most amazing people I know. She is brave, strong, funny, sweet and beautiful. If you happen to have the pleasure of seeing or meeting her, say Hello. I love to answer questions, when asked respectfully and with kindness. She is a little shy until you get to know her - just like most kids her age. And that's really the point, isn't it?

She is a 7 year old kid - who loves to play, draw, be silly and have fun - she just happens to have ichthyosis."

May is Ichthyosis Awareness Month - I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.

Be social: follow me on Facebook, Twitter and Instagram.

Ichthyosis Awareness Month - Kaleigh's story: "Life is short and I’m not going to spend it letting my condition run my life."

I first met Kaleigh after I read her article on Yahoo about life with Netherton's Syndrome. She writes so well - I've been following her work ever since. She has a great perspective on life. And such a supportive family. Meet Kaleigh. 

"If you had told me at age 15 that I’d be as happy and independent as I am now at 21, I probably would have laughed in your face. Or rolled my eyes like many angst-ridden teens do.

However, I wasn’t filled with angst for any of the reasons that most 15-year-olds do. While many of my friends worried over boys or a few pimples that sprouted the morning of our school’s homecoming dance, I had much bigger, heavier things on my mind. But, let’s back up a little bit and I’ll tell you about myself.
My name is Kaleigh Fasanella and I’m from a small town in New Jersey called Medford Lakes. And yes, the whole town is actually filled with lakes – it’s quite lovely. As I mentioned above, I am 21 years old and currently a student at Penn State University studying journalism. I have an identical twin sister and we were both born with Netherton Syndrome, a rare form of Ichthyosis.
I always say that I can rarely recall memories from my childhood unless they involved going to see our specialist, having a flare up or something related to the condition that took over my life. And as a young adult, I watched my friends do things that I couldn’t when I was sick such as go to the beach or hang out at one of the local lakes with boys on warm summer days. I struggled with feelings of resentment and strong, green-monster-like envy of those around me who were ‘normal.’

But honestly, my story is one of success. Sure, times were trying and growing up as the ‘sick kid’ was never easy, but what I’ve learned over the years is that things could be so much worse. When it comes down to it, adapting a sense of gratitude and awareness for all of the good people and things in my life, combined with empowering myself to learn more about my own body, is what ultimately saved me.

Every single day I am beyond grateful for the amazing people in my life. My family and friends have gotten me through many dark days – without them, I wouldn’t be here. When I learned that my skin was sensitive to certain foods like dairy products and gluten, my family helped me to figure out a diet that would work for me and not make me feel deprived. Additionally, my parents never let me feel sorry for myself for too long. They pushed me to be strong, to be a good person and to see my inner beauty.
Nowadays, Netherton Syndrome does not control me. Most days, I don’t even think about it. Sure, sometimes it’s frustrating when I’m going through a flare up and just want to wear a dazzling dress out with my friends, but then I get over it and move on. Because there are more important things to worry about, you know?

I’m definitely not the wisest person but I do know this: life is short and I’m not going to spend it letting my condition run my life. I’m in charge of my happiness and how I handle things. And so far, I think I’m doing a pretty good job. Attitude is everything – cheesy but beyond true.

Thank you Carly for letting me share my story!"

May is Ichthyosis Awareness Month - I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here. 

Be social: follow me on Facebook, Twitter and Instagram.


18 May 2015

Ichthyosis Awareness Month - Christine's story: "I am still just as ordinary as anyone else."

Christine was born with Ichthyosis form Erythroderma. She is in her 50s and lives in Canada. Christine has been an incredible supporter of the Ichthyosis Awareness Month blog project - I am so grateful. She not only shares her own story, but some perspectives from her family. 

Meet Christine. 

"I don’t know that I can say I was happy to be born with this rare skin disease called recessive CIE, but I know I can say that having this disease has made me strong, has made me do things that I might never have otherwise, has made me reach and go beyond goals I might never have otherwise. I have grown to be a confident woman who has had many achievements; in family, work and the community. I have never really talked about CIE with any of my friends or coworkers. Many of them have seen me grow from a naive young woman to a strong assertive adult who has accomplished many things in her life.

I have a wonderful husband, 2 beautiful children, who are now grown and married; and I have the cutest 2 year old grandson. I also have my Mom, the most important person in my life ( besides my immediate family) and 4 siblings; an older brother and sister; and a younger brother and sister, I am the middle child, and as my Mom always said her pregnancy with me was the most planned and with the most unexpected results.
CIE never really stopped me from doing things; I played sports; I attended post-secondary schooling; I had a successful 35 year career with the public service and I am now retired and working part-time. I have travelled, I love to go rv’ing and I love to play with my grandson. If anything, having CIE, had made me more determined to succeed, to be able to show myself that I can!

Now it wasn’t always easy, I had issues of bullying, especially in the first few years of school. My Mom had to send a letter to the school to advise that my CIE wasn’t contagious. There was only 1 other classmate that would hold my hand when we played games in the school yard, she is still a close friend today. I have been asked many times if I was in a fire; I sometimes get comments about flakes in my hair like it must be snowing out there’s flakes on your head (no malice intended here); I just pass it off. Most of the time I tell people that I have a skin condition, and I leave it at that. I used to be more self-conscious of it, not so much now. Although I usually wear long sleeves, and pants or suits; I never show my bare legs or arms; but usually they have to be covered anyway due to my intolerance to cold or heat. Having CIE does have challenges like the weather, as my sweat glands don’t work, my tolerance for the cold or heat is limited. I have to be careful when going outside, not to expose my skin to the elements. Very important also to wear a hat and to be hydrated at all times.

I have had tragedy in my life, I have overcome obstacles in my family life, but my skin disease was not the cause of any of these, life was. So having CIE or not, I am still just as ordinary as anyone else but I will say that I have learned to be grateful for what I do have and where I am in my life today. I wouldn’t have it any other way. I also believe that finding FIRST and finding Carly has made me even more grateful for what I do have and I do feel obligated to share my life experiences with others in the Ichthyosis family; together we make each other stronger! I do plan on putting pen to paper and writing a short story, that is my next goal.

I thought it would be interesting to get some input from my family for this blog so I asked each of them to write down some thoughts about me and my skin condition. Below are some excerpts":

Christine's husband:

"Since I first met Christine her skin condition has never bothered me. I’ve never considered her any different from anyone else. We’ve been together now for over 35 years."

Christine's son (30 years old, married with 2 year old son):

"I have many memories of her while growing up, that at the time we were so used to and she did such a good job dealing with, that it hardly affected her everyday life.

She would always be bundled up no matter what the temperature. Her skin couldn’t be exposed to the sun in the extreme heat and the cold really got to her. Little things that most people take for granted like pumping gas can be excruciating for her because the fumes burn her skin, even if she wasn’t the one pumping it. Growing up she handled everything else so well by dressing up and always being covered that the fumes are the only thing that comes to mind that she would even mention time to time bothering her, even though we knew there was much more.

She was always a very outgoing person, and was involved in our lives as much as possible. Attending sporting events in the blistering hot or cold (and there were a lot of them), she was always the #1 fan in the stands, and still is to this day.

Every now and then the odd person would ask her what was wrong with her, but it didn’t phase her, she would just explain and go on her merry way.

It’s great that there is finally being some light shown on this condition and I assure you my mother will be a front runner when it comes to being involved and helping anyway she can. "

Christine's daughter (28 years old, married):

"I remember waiting in line at Tim Horton’s, and a man walked up to her and asked her if she’d been “burned in a fire”, and she responded with a simple “no”, without getting angry or upset.

While vacationing in Florida, mom would get dressed from head-to-toe and walk around Disney world with us in the smouldering heat, even though it exhausted her. She attended every outdoor softball game in the summer, and would do pretty much anything for her children’s enjoyment, even if it meant putting her own health at risk.

She was very involved in the community, and everyone knew her. When if came to school, extra-curricular activities, and church, she was always the first to volunteer.

I don’t doubt for a second that she suffered greatly as a child, but I believe that as an adult, people are able to see past what’s on the outside, and see how great of a person she is on the inside."

Christine's older Sister: 

"I remember one day, Christine came running into the house, crying out "I'm falling apart! I'm falling apart!" Tears were running down her face. When I asked what she meant by this, she said, "One of the boys said my skin was falling off, so I must be falling apart." It was hard watching such a sensitive soul as Christine dealing with this situation, but she did. When reassured that she was not "falling apart", that she was just shedding some skin, but nothing underneath was being hurt, she accepted it, smiled and went back out to play.

She always had to be covered up in the summer especially. We could all go out with little tops and shorts, but she had to wear pants, long sleeve tops and hats, all the time. Sometimes she would say it wasn't fair, but she would not dwell on that thought very long. She maintained a pretty positive attitude towards life.

That was the story of her growing up. Many times children were very mean to her. They would not hold her hand in school, except for one little girl who eventually became a close friend. Many times she just "sucked it up" and dealt with taunting and bullying by smiling and trying to explain to the person that it was not her fault. There were many tears cried though over these situations.

I remember in high school, my having to ask her to leave volleyball practice so she could go take care of her hands because they were bleeding. She could not put any ointment on as this would stay on the volleyballs, so she could just stop the bleeding and come back for more. She didn't expect to be treated with kid gloves because of her condition and because I was her coach. If anything I treated her more firmly because she was my sister.

She seemed to accept her situation, but I am sure that she suffered greatly because of it, more from the psychological impact than from the physical impact.

Christine's older Brother:

I don't recall Christine’s condition causing us to treat her any differently. She never made it an issue and didn't expect to be treated any different than any other nagging little sister. She was always the one with the nice tan all year round."

Christine's younger Brother:

"First of all, I have to admit that I never acknowledged Christine’s condition as anything but “normal”. Perhaps it was because I was born 2½ years after her and I had no basis for comparison until later in life. By that time, there was no sense of her being different from others any more so than seeing someone with another body type or having a darker skin tone or even having large ears for example.

Don’t get me wrong, I was as mischievous as any other young boy and was certainly not lacking in performing typical brotherly activities towards a sibling, particularly a sister. But I honestly cannot remember ever regarding her skin as a potential weapon of ridicule for me to employ. I don’t even recollect hearing someone make a negative reference towards her in my presence; although I am sure she experienced that personally, particularly on the school playgrounds where children can be terribly cruel and uncensored.

I do remember asking my mother about the “routine” Christine would have to go through every day – applying the thick, oily ointments that were the prescription of the day just to prevent her skin from drying completely. Ironically, I considered the end result – a shiny, rose-coloured face – as a positive end result for having to endure that routine. I never truly fathomed how painful it must have been for her, both physically and mentally, to be living with something that was little understood and there was no doubting her strength in that regard.
Despite everything, she never stopped having fun doing what children typically did and later in life, I know few others with a better attitude or a more positive outlook. Having a successful career, being happily married with two children, and recently a grandmother all add up to prove that Christine is indeed “different” in a way that has absolutely nothing to do with a skin affliction – we should all be so fortunate."

Christine's younger Sister: 

My sister has always been strong, kind, considerate, compassionate and loving. She always has big hugs for me. I don't recall her even once complaining about her skin condition and never used it as a reason not to do something.

Christine's Mother:

"Miracle Baby

December 25, 1958.

Born, a baby girl, 8 lbs, badly swollen, body covered in blisters. “If she lives it will be a miracle”, the Doctor said, “eyes, nose, mouth and ears can’t be seen”. Silence, until the Baby cried, me too!

None of the doctors knew exactly what to name the condition, but they tried many things.

It took three months in hospital before she came home. I was scared to touch her. I cried a lot. Her skin would look good one day but then it would get worse. The salve wasn’t working. She went back into the hospital with a bad cough. Isolation again. She gained weight, the plastic surgeon sewed her ears on to her head, and it’s still like that today. She took her first steps while in hospital.

Christine seemed a little backward, we thought the worst. When she started school in grade one she failed all subjects. During the summer holidays, she, her Dad and I went to physiotherapist and psychiatrist. First we had to bring a letter from her doctor that she was not contagious. Her teachers paid special attention to Christine’s needs. We could see her progress at home. Christine came “first” in her class of thirty.
Children can be cruel. Some called her names, wouldn’t hold her hand while playing, only one girl and she remains a life-long friend.

People would ask questions like, did she get burned, scalded, was she sunburnt. She passed everything in flying colours.

Christine was a happy child, she loved to sing, dance, and she has a hearty laugh. She’s been a model (clothing), ran for town council, taught Sunday school, married, the mother of two children and a grand-mother; and I a great-grandmother!

The most difficult part for me was everyday looking at my little girl trying to make her feel comfortable and loved. She sometimes would ask why she was different. I’ve always said it’s because she is special. How many people have beautiful hazel green eyes, dark curly hair and a beautiful smile and so dearly loved.

Christine has taken control of her life, she takes good care of her health, her CIE, and her family. Her birthday is celebrated by all who know her. No one forgets to sing a happy birthday song or a gift.

Yes, that baby girl lived. She is indeed a Miracle Baby."

May is Ichthyosis Awareness Month - I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.

Be social: follow me on Facebook, Twitter and Instagram.

Ichthyosis Awareness Month - Bree and Kristy's story: "No matter what, she always has a smile on her face, and when she doesn’t, it doesn’t take much effort to get one out of her. "

I met Bree and her mum Kristy at the Australian Ichthyosis Meet. She's adorable. One of my highlights was seeing Adam getting Bree to smile by making funny faces. So cute!

Kristy writes of the challenges of having a baby with Ichthyosis - the condition can cause many other complications. Bree has not yet received an official diagnosis, which I am sure makes it difficult for getting the right treatment. But the short time I spent with Bree and Kristy showed me just how happy and loved she is, and what a great job Kristy is doing.

Meet Bree and Kristy.

"Who Am I? My name is Kristy, and I am the mother of one of the happiest and most content babies I think I have ever known. Bree is my 10 month old daughter. She arrived into our lives in July of 2014, smack bang in the middle of winter. I remember it all like it was yesterday, mind you, I wouldn’t change a thing now.

Bree was born at 32 weeks and 5 days. I have a history of delivering premmie babies so it seems. So, when I found out I was pregnant with her, I had a feeling that it was going to happen this time around.

After a few days in hospital and all of the hard work was over with, we were delighted to welcome Bree into our lives. Due to her arriving so early though, and there being an infection present, she was taken straight from me once the cord was cut and admitted into the special care nursery, where she spent about 3 weeks before she was allowed home.

I remember when I first saw her, and the first time I held her. She had this odd looking white stuff over some of her back, and on the side of her face. She had stuff caked in one of her ears too. I remember thinking to myself “It’s the normal stuff that a baby has on them when they are born, but why didn’t the nurses wipe if off her? Never mind, I’m sure it will come off once she has a bath”. I was wrong.

It took quite a few days after she was born, many tests, photos, and various doctors poking and prodding at her. I remember her poor little heels were bruised black and blue from heel pricks to do blood tests. Finally, we were told… “Your daughter has a genetic skin condition, called “Congenital Ichthyosis”. I had no idea what it was, I had never heard of the word “Ichthyosis” before, yet I had a million and one questions. Questions that for the most part went unanswered for some weeks as nobody at the hospital had ever seen a case of Ichthyosis before, and some had not even heard of it. I tried to educate myself via the internet, but we all know how unreliable and confusing some of that information can be. To date, we still don’t know the type she has. We have been told though it looks like either a mild case of Lamellar Ichthyosis, or a little more severe case of Ichthyosis Vulgaris. We haven’t had genetic testing offered to us to diagnose the particular type, as we were told it is too expensive to do at the moment.

Bree was discharged from hospital under care from a paediatrician, dermatologist, ophthalmologist, geneticist, ENT & Audiology as well as physiotherapy to add to the list.
I’m not going to lie. The last 10 months have been hectic, exhausting and emotional. Appointment after appointment. Different creams and lotions for her to try. Most working for a period of time and then no longer working as well as they once did. One of our biggest concerns was her hearing. She had failed her Newborn hearing test twice, as well as numerous others outside of the hospital. After a draining ENT & Audiology appointment a few weeks back, we had her ears cleaned out completely, which has given her now perfect hearing. This will continue to be monitored for a few months to see how we go.

Otherwise, Bree is doing so well. Considering all that she has been through during her very short time with us, I have to say that she truly is a little treasure. No matter what, she always has a smile on her face, and when she doesn’t, it doesn’t take much effort to get one out of her. She has a beautiful and bubbly little personality already at such a young age.
We have been told numerous times now that as she gets older, there is a good chance that her Ichthyosis will improve also. I am hoping that this is the case. Don’t get me wrong, I do think about the years ahead. I worry for the stares, comments and remarks that she is going to face as she gets older. I am confident because of how much she is loved, and the support she will have, that she will get through it all, and be a better person because of it.

Bree is the youngest of three children. She has an older brother who is 5, and a sister who is 2, and they both adore her. I know they will be there for her no matter what as she grows up. They love to help me out with Bree. Her sister in particular loves to help me put Bree’s cream on, more so on herself than Bree at the moment!
For the first couple of months, when I looked at Bree, the first thing I would see is her skin. I don’t now. I see straight past it to the beautiful little girl that she is now and who she will be in the future. Ichthyosis probably did change our lives at the start… I was always worried when I went out with Bree that people would look at her and stare at her. Now, it doesn’t bother me whatsoever, it is what it is and we will deal with it the best we can!"

May is Ichthyosis Awareness Month - I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.

Be social: follow me on Facebook, Twitter and Instagram.


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