27 May 2015

Ichthyosis Awareness Month: Casey and Chaz's story: "We see Chaz as our one in a million and we are so lucky to have him in our life."

Last year I received an email from a dermatologist asking if he could pass on my blog to new parents of a little baby with Ichthyosis. He wrote: "I am asking firstly if you would be happy for me to direct the family to your blog. Also, your advice in managing Netherton's is likely to be more valuable than ours and it would be beneficial to have your input." I was flattered, and agreed - happy to pass on my experince to new families. 

A few weeks later, Casey (Chaz's mother) and I became Facebook friends, and the family came to the Australian Ichthyosis Meet earlier this month. It was so good to meet them! Chaz is such a cutie - so cheeky!

Tonight Casey writes of the first year of having a baby with Ichthyosis. Chaz has Netherton's Syndrome and has just turned one.

I am so glad we met - Adam and I are travelling to Ballarat to spend a day with the family soon. 

Meet Casey and Chaz.

"Hi my name is Casey in 26 years old and I live in Ballarat in Victoria. I’m married and we have a very special man named Chaz. Chaz is one and is living with Netherton’s syndrome. The first 6 months was such a rocky road with spending 6months in the Royal Children's Hospital fighting infections, high sodium and failure to thrive. We were first told by the doctors that the first 12 months will be the hardest with Chaz having to build his immune system up, so we prepared ourselves to be in and out of hospital.
Pregnancy and labour were pretty good. The first 2hr of Chaz life was spent on my chest and it’s the moment I will treasure forever. That moment of excitement, joy, unconditional love that you final have your health baby in your arms. Not knowing that anything was wrong or what road was ahead of us was not on our mind. Chaz spend the first 5days in special care unit as doctors where trying to work out what was going on with Chaz skin. Day 5 Chaz was rushed to nicu at The Royal Children’s Hospital has he was servilely dehydrated and had high sodium. Doctors run a skin and hair biopsy for NS but it come back inconclusive. 

It wasn’t until he was 5months old that we had it confirmed through a genetic research program that Chaz had NS. When signing the papers for the research we were told that they sometimes find other conditions and that’s what happened. Chaz is living with Netherton’s syndrome and Jeune syndrome. We see Chaz as our one in a million and we are so lucky to have him in our life.
Having a child with a rare skin condition has made such a stronger more confident person. I have learnt things I never thought I would have. During the journey there were many tears, smiles and doubt along the way. The hardest thing I find I have to deal with are peoples questions and finding the right words to explain it also the way people look at us (like we have let our child get sunburnt?). I know that as time goes on I will find it easier to explain. Chaz’s routine of bathing, feeding, and nappy changing takes a long time to do as he doesn’t like his creams and will often cry. 
One thing I wish I could experience was the new born smell, Chaz isn’t able to have the normal baby stuff as his skin is so sensitive. We have learnt to adapt to all of this and we don’t know any different. Since joining Facebook pages I like to support other people going through the same situation. I find it easy to talk to people that is in the similar situation. 
Chaz is such a happy cheeky little boy and I’m so glad that he is mine."

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 - Annaliese and Jossilynn's story: "Teaching friends, family, and even sometimes doctors about Ichthyosis can be very rewarding, but also very tiring."

Today Annaliese shares her story of being a mum to Jossilynn - a little girl with Epidermolytic Ichthyosis. I really like how she acknowledges how hard educating people about Ichthyosis is, and that she is in a good position to educate doctors about her daughter's skin. Such an amazing advocate.  Annaliese writes that "Ichthyosis is a hard sell" - and I  get this. When you read about the severity of the condition on medical websites, it's overwhelming, but when stories like these are shared, it can make it easier to understand for new parents. 

Meet Annaliese and Jossilyn. 

"I always knew I was going to be a mom. When my sister Tasha, had her first baby Morgan I didn’t think twice. I babysat often and spent as much time with him as I could. He is 13 now and I swell with pride at his accomplishments and put on my mama bear face when he’s hurt. I was only his age now (13) when he was born, but I knew then. Most girls dream about becoming lawyers, playing sports professionally, and college. I knew I was going to be a mom.

When I found out I was pregnant with my first, it was a surprise. It was also a whirlwind. Within a year, I was pregnant, engaged, married, a mother, and then a Navy wife. Not to mention moving 3000 miles away from everything I knew. Those early years were definitely learning ones. Full of trial and error for both my husband and I. I think that’s why we’ve handled things as well as we have recently.

The week my husband was discharging from the Navy, I found out I was pregnant with number 2! A surprise, but only because we had been trying for awhile after Tristan, our son, was born to have another with no luck. So, we packed up and moved back to our little small hometown in California to prepare for our daughter. My pregnancy was normal; the birth itself was complicated with a previous emergency c-section with our son. So when I went into labor, they prepped the OR immediately.

Jossilynn was born December 22, 2012 at 12:01pm. There was a bit of panic in the room, I just saw my beautiful daughter. After that she was transferred all the way up to UC San Francisco where she was diagnosed with Epidermolytic Ichthyosis (EI). She was also diagnosed with Palmoplantar Keratoderma (PPK), which means her palms and soles are affected as well. I have told my longer story before about the early experiences, what I want to talk about is now ☺
Fast forward 2 years. Jossilynn is a sassy, opinionated, spoiled, funny, cunning, and beautiful girl. She tests my limits every single day. Her skin doesn’t blister as much as it did that first year of her life but she does have more build up now. She has nightly bathes, usually with bleach, dettol, or apple cider vinegar. After her bath she is covered in aquaphor and pajamas.

Antibiotics. Oh antibiotics. We went through a very rough year with infections. Mostly strep A type. She would be on Clyndamyacin for 2 weeks, she would be fine for two weeks, then BAM; Infection! It got so bad that I was literally begging her dermatologist to try a constant low dose antibiotic for the time being. I had done the research and read all the side effects that come along with a long term antibiotic. But, when your child is in constant pain, you do what has to be done. We started her on a low dose of amoxicillin almost 3 months ago now, and not one infection. She has been so happy.

When you find out that you’re going to be a parent, you rarely take the time to think of what could go wrong. Something like Ichthyosis, wasn’t even on my radar. I had never saw or heard the word until I seen it written on my daughter’s chart 2 days after she was born. Jossilynn’s older brother was just diagnosed with Type 1 diabetes 2 months ago. I felt like I had been stabbed in the heart twice. Diabetes is a well known disease.. You see it everywhere. With Ichthyosis, I didn’t find any real information until 2 months after we brought Jossilynn home.

Ichthyosis has become our normal, and slowly so is Diabetes. I have two special children, not special needs. They take up a lot of my time, true. Some days I want to shove my head under a pillow and scream, and I won’t deny it may have happened a time or two. I still wouldn’t change my life for anyone else’s. Every day I watch my children get bigger and I can’t slow it down. I watch my son become more independent and give himself a finger prick, I watch Jossilynn become more compassionate and care for her doll. One day they’ll be grown and I refuse to miss one aquaphor application or insulin injection!
Ichthyosis is a hard sell. When you are first diagnosed, or your child is diagnosed you’re perplexed. What in the world is Ichthyosis? If you’re reading a website definition it goes something like this; Ichthyosis is a word to describe a host of genetic skin conditions, up to 28 different types. Ichthyosis is generally made up of fish-like scaling on the body. Patients tend to have a lot of skin build up, tend to overheat due to the skin buildup, along with other complications. There is no cure. The best treatments are made up of disinfecting, creams and lotions, and temperature control.

Teaching friends, family, and even sometimes doctors about Ichthyosis can be very rewarding, but also very tiring. I would never say I am an expert on Ichthyosis, I learn more all the time. But, at a certain point it becomes like a second language. So many abbreviations, scientific words, and double meanings. Not to mention they keep changing the name of the conditions! What used to be EHK (Epidermolytic Hyperkeratosis), is now simply EI (Epidermolytic Ichthyosis).
I am my childrens’ biggest advocates. I learn more to better myself, and better their care. I can usually tell our dermatologist what needs to be done or reevaluated. Of course I always defer to her. I would never ignore the doctor’s orders, I can just tell them what I feel will be best in my experience since no one knows Jossilynn and her skin like I do.

I look at my life and I know I made the right decision even when I was 13. I was born to be a mom. I am a smart, independent, strong woman that is capable of many things but I see my life now as more rewarding than anything else I could go out and accomplish. One day when my kids are older and more independent, I will probably be bored out of my mind. I will eventually find another goal in life, but raising these beautiful special children will always be the most rewarding."

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.

26 May 2015

Ichthyosis Awareness Month - Becky's story: "I realize that being normal is what I am."

Tonight Becky tells her story of life with Lamellar Ichthyosis. It took her a long way to come to terms with her condition - and the turning point for her was Camp Discovery. I am so glad she's stopped worrying and has made her health and happiness a priority.

Meet Becky.

"What is it like to live with ichthyosis? It is itchy.
Growing up in a small town in Wisconsin where no one knows how to care for your skin or you is a challenge in itself. To have doctors look at you and go I have no idea what to do for you or how to treat your ichthyosis. Then to go through life not knowing why you are different from everyone else. Hoping that you will someday grow out of this. And then coming to the realization that that will never happen. You start to lose hope, you start to become depressed, and you start to think nothing good will ever happen to you.

Then when you go out in public and people look at you funny, stare at you, laugh at you, or make a rude remark you wonder what is so wrong with me. What is it that is different about me? Then you remember that your skin is the only thing that is different. The thoughts start to go through your head what would it be like to not have to put all of these creams and ointments on several times a day, not have to take a 2 to 3 hour long bath every day, not to spend most of the day itching, and not have to worry about what other people are saying and doing behind your back. You start to think that it would be great to sweat like a normal person. To not have limitations on what you can or cannot do because of your skin. All of these thoughts and more have gone through my head at one point in time in my life.
Then I stopped thinking like this. Up until I was 18 I had never meet anyone else with a skin disorder. My parents were members of F.I.R.S.T. but never did any of the activities or conferences. I felt alone, lost, and out of place. I felt like no one understood me or my skin. Then I learned about Camp Discovery through the AAD (American Academy of Dermatology). After meeting the kids and adults at this camp my self-esteem, self-confidence, and respect for myself increased and became a more important part of my life. I stopped caring about what other people were doing or saying about me. I started to focus on me and making myself happy and healthy a priority.

I still have days where I will see a little kid ask their parent “what is wrong with her?” I put a smile on my face and just keep walking. I still have thoughts about what it would be like to be normal. To do anything I wanted but then I realize that being normal is what I am. Take 5 minutes and talk to that person that does not seem normal to you. You are going to find that they are just as normal as you are."

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 - an update on Evan. "Different is special."

Since we last caught up with Evan and DeDe, Evan's become a big brother! He is SO doting on baby Vince - the photos of them make my heart melt. Beautiful. 
Evan, who has Harlequin Ichthyosis, with his dog Bruli

I love seeing the progress Evan is making, and also reading DeDe's perceptions of parenting a child with a disability. Evan has Harlequin Ichthyosis and he's almost five years old. You can read DeDe's blog and follow their adventures on Facebook

Say hello to some of my best friends, DeDe, Evan and Vince!

 Evan, who has Harlequin Ichthyosis,

Being the mother of a child with special needs has been rewarding as well as exhausting. I have become a better person because of Evan, who has Harlequin Ichthyosis, and I am very proud of all the accomplishments he has made. Does he do the same things as other children his age? No. But that's ok. That's our life. We are happy and that is what is most important. Some people do not like the term "special needs". This term does not bother me at all and really seems accurate, as my Evan really is special.
Evan, who has Harlequin Ichthyosis,  with his mum

Special is a term used to describe something better, greater, or otherwise different from what is usual. I cannot think of a better description when I think about Evan. He is special in so many ways. And though he may require special care and have special needs, there is no reason to think of it negatively or as anything other than wonderful.
Evan, who has Harlequin Ichthyosis, with his brother

A parent's job is to care for, protect, love and provide a happy life for their child. Those are, at least, my goals as a parent. Ultimately making sure Evan is safe and as healthy as he can be with all considering. Is it an easy job? No. Is it a rewarding job? Absolutely. I have come to appreciate the finer things in life. Things like having conversations with Evan, seeing him get excited over a toy or game, watching him play pretend or seeing how caring he is with his baby brother makes me forget about the overwhelming pressure of his care.
Evan, who has Harlequin Ichthyosis,with his brother

I'll be honest, I am sick of doctors. I am sick of appointments and I am sick of worrying. But it comes with the territory so I just pick up and move on. I tend to not take things for granted, like having healthy skin (myself) or how I can easily close my eyes when I sleep. Most people wouldn't think twice about the fact that your eyes close when you sleep. But in the Ichthyosis world, it is a moment to celebrate and be grateful for when it occurs. My husband made a point to show me how grateful he was for the care I am giving Evan. After checking on Evan while he slept, he came downstairs and wrapped his arms around me, since he noticed Evan's eyes were closed tight. Sometimes the simplest gestures have the most powerful impact.

Evan, who has Harlequin Ichthyosis, on a bike

My life has been so wonderful. And so has Evan's. There really isn't anything I would change about it. If anything, I would like to take the "life threatening" aspect out of his disorder. We can handle the skin care and management. We can handle the baths and endless Aquaphor applications. We can handle the the social interactions and comments from strangers. But the worry for his life because of weight gains, dangerous temperatures or possible skin infections is not something I like getting use to. 
Evan, who has Harlequin Ichthyosis, with his brother

I am very proud of my special needs child. And when it comes down to it, doesn't everyone have special needs? Doesn't everyone have needs that are unique to themselves? Things that make life happier or easier? In reality we are all special and we all require "special needs". Others just require a little more. 
Evan, who has Harlequin Ichthyosis, with his brother in swings

Different is special."

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.

25 May 2015

Ichthyosis Awareness Month - Julius' story - "Believe that miracles happens when you least expect it."

Here is Julius' story, a baby born with Harlequin Ichthyosis in the town of Parang, in the province of Maguindanao, in the Philippines. The family traveled to a bigger hospital in the region to get some answers about the condition of their little boy just after he was born, but this did not assist with treatment advice. 9 months later, Julius' story was discovered by hospital volunteers Jacquelyn and her sister, who sought assistance from FIRST, and she shares this amazing story for IAM. Julius' mum has given us permission to share their story and pictures of her and Julius.  

This story is a serious example of why access to healthcare is so important. While the photos might be confronting, they show the severity of the condition. 

I asked Jacquelyn whether there is a fundraiser for Julius.She told me: "When I posted Julius' condition finally he was visited by our local government unit head and help us out with the medicines and they promise to come back and raise funds for Julius." So when I get word about a fundraiser, I will spread the word. 

I've cried seeing photos of his tight skin and little fused hands and feet. Keep fighting, baby Julius. And thank you for your amazing care and advocacy Jacquelyn - you're giving a voice to this important story. 

"Julius was born on July 25, 2014 in a birthing center here in Parang, Maguindanao. Since our place is not that progressive and developed most of the health assistance are really hard to get, especially for those people we consider to be below the poverty line.

3 days after Julius was born, his mum and dad, together with the extended family, decided to go to a regional hospital (Cotabato Regional Medical Center) to seek a full medical check up. But the doctor's weren't able to identify Julius' condition at first, so they completed some a research on the internet and found out and diagnosed Julius with Harlequin Ichthyosis.
Julius didn't undergo any tests from the hospital, that's why no prescription or any specific treatment advice was given. The doctors just told the mum to take care of the baby as long as they could (they actually gave Julius a week to survive, which is frustrating!). Since the family was convinced there was no cure for the baby, they went home and waited for the dreaded day. 

But Julius was born a fighter. He lasted 9 months without any vaccination or newborn screening, or any formal treatment. His mum bathed him everyday and applied pure coconut milk to soften the skin. She was doing everything she could to care for her little boy, but it was not enough. Julius' other hand melted, his skin smelt bad and still there was no medication.
As I keep on saying he was a fighter. I actually met Julius last April 13, 2015 when I stumbled across one of his pictures on Facebook. I really had no idea that his mum Annie Jean gave birth to Julius with Harlequin condition. I did some research and found FIRST, and made an inquiry and confirmed the pictures I sent them that the baby has a Harlequin baby. So i decided to visit them and took my camera. I asked for permission to use the pictures and emailed again to FIRST and ask for information on how to treat such a skin conditions, and they provided me with a link. My sister and I decided to make a move and tried to contact three possible NGO's and got a confirmation from them that they will help Julius to get medical attention here in Davao City ( the Southern Philippines Medical Center, or SPMC). FIRST also awarded Julius financial aid and the family was able to buy the prescriptions we cannot get inside the hospital.
Julius was admitted May 10, 2015 here in SPMC and on Day 1 members from the Pediatrics Department, Ophthalmologist Department, Genetics Department, and Dermatologists Department convened to have a multidisciplinary action so Julius can start his treatment.

Day 1, Julius underwent surgical cut for his IVF's (pedia), we were given prescriptions for Julius' eyes because they were already infected. The Ophthalmologist confirmed he was already blind because both irises are damaged. For his skin, the doctors instructed us to bathe him morning and night with Cetaphil cleansing bar and body wash, and to apply a restorative moisturiser, plus a lotion that Dermatologist made to soften Julius skin easily.

We followed what was instructed of us, and Julius skin looks great without even having problems with irritations.

There's just a little problem 2 days ago because he has diarrhea and lost too much fluids apart from Julius pulled his dextrose and he needed another surgery and he has fever last night, but it subsided today. And now he sleeps soundly again with his beautiful skin, though there's a little bit of hard skin left on his feet and back of his head, and a few patches around the eyes and ears but soon it will soften too.

Now Julius needs ongoing supply of petroleum jelly and Cetaphil Restoraderm moisturiser importantly. The Dermatologist has said that if Julius' continues to improve, there will be a medication that can assist with his ongoing treatment, too. In a place like ours, all we have is love and service.

And that's all I can give them. I am looking forward to Julius' full recovery and it's more than enough to see him grow happy with his family and to instill to them to keep on praying and never lose hope because there are good people everywhere that will help them. They just need to believe that miracles happens when you least expect it."

This post was edited by Tash who blogs at Jouljet. Follow her travels on Twitter and Facebook

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.

24 May 2015

Ichthyosis Awareness Month - RJ's story: "RJ is a great kid and he deals with enough physically, he should not have to deal with ignorance and rude, unkind people as well."

Mother of five, Valerie, shares the story of her 4 year old son RJ. Fiercely protective of her little boys’ happy spirit, Valerie details the effect of daily public ignorance on her family. Valerie also explains how her and her husband had to search for their own diagnostic answers around Netherton’s Syndrome. She writes about a terrible case of discrimination that happened to her family recently.

Meet Valerie and RJ.

"My name is Valerie and I have resided in Las Vegas, Nevada, USA, for 30 years. My husband and I have five children aged 18, 15, 9, 4 and almost 2.

Our 4 year old, named RJ has Netherton Syndrome.

During the first six to seven months of his life, we lived in out of hospitals and Ronald McDonald houses - here in Nevada and also in Utah and California - trying to get a diagnosis for what was going on with our baby. RJ was very sickly as an infant and wasn't growing or gaining weight.

When RJ was two months old, my husband and I (after many, many hours of searching the internet for similar symptoms) found the story of a little boy named Jack, who lives in the UK. Jack also has Netherton Syndrome. After reading his story, we knew immediately that this is what our son had as well.

We were, and still are, so thankful to Jack's family, that they shared their story online. This allowed us to reach out to them and get help with what kind of care our son needed.

When RJ was 6 months old, we were able to get him to UCLA in California and have his genetic testing done. Finally we got the confirmation that yes he did indeed have Netherton’s Syndrome.

It was scary and we had a lot to learn. Most of the doctors we saw knew nothing of NS and we were grateful that we found online support through nethertonsyndrome.com and the Facebook page that Jack's family put together for NS.

RJ is now 4 and is such an amazing, strong, happy, silly little guy, who loves everything most little boys love and is such a joy to be around! One of my biggest concerns is making sure that RJ stays this way, and never lets society bring him down or break him.

Because of RJ we do meet a lot of nice, interesting, caring people, who want to be educated and are happy to have met him and thank us for educating them on Ichthyosis.

Unfortunately, we also meet a lot of ignorant, uneducated, not so nice people, who speak before they think and have no consideration for others. I have learned a great deal of patience due to this; before I would be quick to speak back or stoop to their level and then regret it later.
Having RJ and being a busy mom on-the-go, I take him pretty much everywhere with me, and I learned quickly that I couldn't feed into the ignorance. Not only do I not want my son to feel like there is conflict every time we are in public, I also found that it is much more satisfying to educate the people on his condition and let them feel stupid for speaking out of turn.

However, I am not perfect and sometimes I can't help but lash out at the ignorant things that come out of people's mouths or remind grown people that it is not polite to stare!

Just recently, I took RJ to an indoor playground since the weather is getting a little too hot for him to play outside. The man working there, who I believe to be the owner, took one look at RJ and immediately said that he was not allowed to come in. My mom argued with the man - I had not entered yet and wasn't aware of the situation.

I walked in the door and my heart was broken as I saw this man staring at my baby and refusing to let him come in. He stated that he didn't want the other kids to "catch" anything and that my son was too itchy. We tried explaining NS to the man and even threatened to complain to the ADA (Americans with Disabilities Act) and to sue him for discrimination if he didn't let us in. We explained there is nothing is wrong with my son and that the kids inside are actually more harmful to my son than my son is to them. He didn't care. He couldn't stop staring long enough to even hear what we were saying. I pulled my phone out and started to take a video of what the man was saying and sadly enough you can hear my 4 year old in the background asking the man why he cannot let us in.

As we were leaving, the man finally decided to tell us that we could come in but if someone complained we would have to leave. My oldest daughter told him it was not worth us spending our money there and we left.

I forwarded a copy of my video to the local news stations but none of them picked up our story, which really upsets me as this would be great coverage for Ichthyosis awareness. If people could see RJ's story, and recognize him when we are in public, it could eliminate a lot of the heartache, staring and comments that we deal with.
RJ is a great kid and he deals with enough physically, he should not have to deal with ignorance and rude, unkind people as well. I hope we can build Ichthyosis awareness up enough so that, even though it is a rare disease, it will not be so uncommon to the public that they do or say things intentionally or unintentionally that hurt people's feelings."

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 -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.

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