By Addison Kemper
Hello! My name is Addison and I only recently discovered that I have Clouston syndrome. I am currently 28 years old and I live in Canada.
I was born with short, sparse blonde hair and eyebrows, thick curved finger and toe nails, as well as other symptoms such as dry eyes, thick skin on my feet, and retained baby teeth. I am the first in my family that I am aware of to have Clouston syndrome, so I grew up not knowing what my condition was.
My Inner Battle
I was often told by my family “that’s just how you were born, you are perfect the way you are”. Which is correct, and I was accepted 100% with love in my family. But it was never really a good enough answer for me. I just thought that that was how I was supposed to feel about myself and tried not to bring it up.
My family did the best they could and raised me as a normal kid. But maybe that was the problem. I wanted answers so badly but then rarely asked questions because I also felt bad for not loving myself as I was constantly told I should.
It was an inner battle of knowing I was different but being told I was perfect.
It was always in the back of my mind: “What is wrong with me? Why won’t anyone tell me why I look different? Does anyone even actually know? Is there anyone else out there who is like me?”
A part of me wishes I had answers sooner, but there can be no blame. I was loved, and I was raised how my family thought was best for me.
My Search for Answers
I did seek help from doctors when I got old enough to make my own appointments, but no one seemed to know anything that could help. One of my previous family physicians told me, “Well you aren’t dying, so don’t worry about it.” I felt so defeated right then and there. I was never going to know, so I just learned to stop asking.
My hair was so blonde it was almost invisible. My nails were (and still are) thick, curved, and discolor if they grow too much. I was also always taller than pretty much everyone my age, so I stood out in a classroom setting.
I was always getting asked if I was a boy or a girl, or “do you have cancer?” Each time would sting a bit more than the last. I mean, I was getting older and more definitely looking female, so why were people still asking?
My Hair
I remember my Dad was watching the news one day around when I was 12 years old or so. He mentioned that he saw a story about a young girl with alopecia who had gotten a wig and was able to play sports and swim, etc. I got so excited.
I went on the computer and searched for hours but I couldn’t find anything about the story he was talking about. My dad was a single parent and was often overwhelmed with work and having to take care of my brother and I. When I would bring up the fact that I wanted a wig, or him to help me try to get one, he was just too busy/tired/didn’t want to.
Also, since I grew up in a house of boys, I had no experience with makeup or anything hair-related. It felt weird wanting to have a wig, because I didn’t know anyone who had one. It had me thinking “would I get bullied for having one?”
My Bullies
I was teased and bullied all through school which made me an introvert and I now have social anxiety. My best defense against bullies was to just walk away and ignore it. What else could I do? I often told my dad about the bullying. He always just said to ignore it, that they’ll stop when they realized it didn’t bother me. But in truth it really did bother me, and I had to hide it.
My embarrassment wasn’t limited to the schoolgrounds though. When I was 15, I was in a public restroom washing my hands. A women walked in, saw me, and loudly proclaimed, “Excuse me, this is a women’s washroom!” I was so shocked I just looked at her and said, “I know,” before basically running away.
It was those moments that would turn a good day into a bad week. If I had forgotten for even a minute that I didn’t look like a normal teenage girl, there was always a random stranger to remind me.
My hair didn’t really start to grow until I was about 18 or 19 years old. Before that, I almost always wore a hat. I wore a hat so much that I got used to sleeping with one. Some people may think it’s silly, but as a female, hair can be very important.
As it finally started to grow it became clear that I had a noticeable bald patch right in the middle front of scalp, and nape of my neck, and just overall still sparse hair. I tried coloring my hair in darker shades and learned how to style it in a way to hide the bald spots as best I could. I also started getting gel nails applied at a salon to hide my real nails
My Jobs and Clouston Syndrome
My hair and my nails hurt my self-esteem and affected my quality of work at my jobs at times. I’d have to call in sick simply because my eyes hurt so bad. I’d have to stay in bed. The only remedy, even to this day, is to have a warm compress on my eyes and fall asleep. Then, the next day I endure blurred vision. Finally, the next day, my eyes go back to normal.
I try to avoid jobs where customers/clients see my hands. As gel nails can get expensive, it was not always an option for me to have the illusion of “normal” nails. I once had a job as a medical assistant where I would speak with clients and I would have to type their answers into a computer in front of them. To have my hands as the main focus in an aspect of my job in front of other people was very scary for me. I would spend hours every night making sure my nails were as presentable as I could get them.
My Life-Changing Moment
September 2009 is the moment my life would change forever, and I didn’t even know it. I met Andrew, who is now my husband. He fell in love with me for who I am, not what I looked like. He didn’t care about my hair, or nails, or anything else.
I am so happy and so lucky that I met such a wonderful man. When we got married, I was already three months pregnant with our first baby. We were over the moon excited! Now I’m not sure why or how, but during pregnancy, my hair looked healthier, and even grew more than it ever has. It was a nice side effect that I wasn’t going to question.
There was one point in the early stages of my pregnancy, however, where one of the blood tests came back that the baby had a 1 in 40 percent chance of being born with Down syndrome. For us, we knew we would love our baby no matter what, but we were sent to speak to a genetics counselor.
During that appointment, I told them about how my hair and nails were different and asked if I should be concerned about passing it on or if maybe the baby had it, too, and that’s what caused the test to come back abnormal. They told me that I didn’t have to worry about that, but said that I could have an amniocentesis done for peace of mind. We went ahead with the amnio, and then got a call a few weeks later. Our baby was perfectly healthy.
My Mini-Me
We welcomed our beautiful baby girl, Pippa, in 2014. I knew instantly that she was just like me. Even though she was so tiny, right from birth, I could tell that her nails were just like mine. The moment I became a Mom, I went through so many emotions. Happy, scared, excited, nervous.
But ultimately, I knew I had to be her advocate and someone who she could look up to. I had to set my own insecurities and anxieties aside. It was like once she was born, it didn’t matter that I didn’t have the answers. It mattered to me that SHE didn’t have the answers.
I wanted to find out what exactly it is that we have, because someone had to know! Oh, and as for my hair, about three months after Pippa was born, my hair started drastically falling out. I didn’t think I would care. I thought I was past that point of my life. But, I wasn’t. Even though it still wasn’t perfect hair, it was more than I’d ever had. It was like the universe was just throwing another hurdle at me.
Pippa was a very good baby! She was independent and strong-willed and wanted to do everything herself. When Pippa was two years old, we welcomed her little brother, Brolan! She has been an amazing big sister, and he looks up to her so much.
My New Hair
At this time, I do not think Brolan is affected with ectodermal dysplasia. In fact, his hair actually got so long it was becoming a topic of conversation in the family and he had to get a haircut. Pippa got upset that she didn’t get a haircut too. This gave me a literal flashback to all the times my brother and cousin got to do those normal kid things, and I missed out on, but very much wanted to participate in.
So, I went and found a long pink Halloween wig that I had, and we made a fun wig cutting tutorial video, and now the pink wig is short enough for her to wear and play with, and she calls it her “pink hair hat.” The pink wig got me thinking that maybe it was time for me to try some actual wigs for myself, and I did! And, I’m so happy I did!
My Girl
As Pippa grew from baby, to toddler, to child, she developed quite the amazing personality. She has always been very personable, outgoing, loud, funny, charismatic and just generally a kid that everyone loves. Her hair is still very blonde and sparse, still with a bald spot on the back of her head that infants usually develop.
If you compare a photo of her and I at the same age, you couldn’t tell us apart except from our clothes. She looks like I cloned myself! Her nails are curved like mine, except I’m a bit worried that hers may have more of a curve and cause more problems for her. I used to get a lot of cracks under my nails, and she has already had skin cracking. She has gotten her nails caught on things at school and has some bleeding under a few of her nails. I try to keep them trimmed back but her nails grow so much faster than mine do!
She LOVES going to school! It’s actually painful for her to wait all weekend to go back to school on Monday, because to her, Monday can’t come fast enough! She also loves airplanes, swimming, ice skating, and her favorite color is “a rainbow.” She makes me laugh every day she is just so silly.
My Diagnosis: Clouston Syndrome
Over the past four years, I’ve done my best to step into the role of mom of two kids. I juggle appointments, and holidays, and all the things that life throws at you that just makes us so busy. But, I made time and went to a few different family physicians, and a pediatrician multiple times, and finally had a referral to take Pippa to a pediatric dermatologist.
Right before we had that appointment though, I had searched my symptoms through Google because I was still skeptical of any doctor in my life being able to actually diagnose us. I ended up connecting with a pachyonychia congenita (PC) group and they sent me a genetics testing kit in the mail.
While I was waiting for those results, we went to see the dermatologist. He asked a few questions, but it only took him five minutes to say the words “ectodermal dysplasia” and then referred Pippa to genetic testing. Not long after that is when I received the genetics report from the PC Group. It came back that I had Clouston syndrome, which indeed is a form of ectodermal dysplasia.
My New Support Network
After I read the report, it was like so many doors opened for myself and my daughter. I learned that there are many others like us! I found the National Foundation for Ectodermal Dysplasias and was able to connect with others just like Pippa and I.
Anyone who has had the pleasure of meeting Pippa will say that she is full of life, love, and smiles! I am crossing my fingers and hoping that I can help her hold onto that for a very, very long time, and to not let strangers, classmates, or anyone, squash out her bright light.
Just knowing that we are not alone means so much to me and I just want to say thank you so much to the NFED for giving us a place to connect and meet with others just like us. It truly means so much and it’s exciting to me to know that Pippa will always have a place to turn to for additional support!
Addison Kemper is a guest blogger for the NFED. She lives in Canada with her, husband, Andrew and children, Pippa and Brolan and is affected by Clouston syndrome.
I just loved this story! Though my daughter and son have HED, there are a lot of similarities. My son, who had gorgeous hair, went suddenly bald at 22. He had a very hard time for awhile but now finds that his bald head gives him a tough look for work as he is an armed personal guard.
ED kids are so amazing and the world can learn a lot from them. We can’t wait to go to the family conference again this year. The love and acceptance we find there is always the most fun and comforting place to be. Thanks so very much!
Thank you I am so happy you liked my story:) I can definitely relate to your son and know at least some of what he feels. Glad he found the silver lining though. We are also making the trip to the family conference but this will be our first time. We are so excited!
We’re glad you enjoyed Addison’s story. We especially appreciate your comments about the NFED Family Conference! That’s exactly how we want it to be: fun and comforting! ~ Jodi, NFED, Director of Marketing and Communications
I love hearing your story — I also have Clouston Syndrome. Your story resonated with me and paralleled my life in many ways. I got it from my biological father’s side of the family. 5 of my 6 kids also have it. My bio-father’s side also had (and maybe still doesn’t?) no idea what they had/have. After I was born my mother was on a mission to find answers. I was poked, prodded, and invited to participate in dermatology conventions like an exhibit. At the age of 5; I was given a “tenative” diagnosis of ectodermal dysplasia — after my mom gave the doctors that as an “option” from her own research. It was confirmed in genetic testing about 6years ago. I’m 36 now and we’re thriving! <3
Wow I can relate to you too! I dont know much about my biological mothers side. I know I have a half brother, but I’m not aware of anyone with cloustons. I’m sorry you had to go through so much, especially so young. Thankfully with Pippa, the appointments were all just boring mommy and doctors talking, while she got to play with the toys. I also had to go into appointments with potential diagnosis ideas so the doctors could refer me to another doctor who could know more. Otherwise it was just them saying they didn’t know and didnt know how to proceed. I’m so happy you and your family are doing well!! Hopefully with more awareness more doctors will be more informed and more people can be diagnosed without having to wait years. <3
I’m sorry to hear that you road to a diagnosis was a long and not always comfortable one. We’re glad that you were able to get a definitive answer so it can answer your many questions. We really love this part of what you said, “we’re thriving!” ~ Jodi, NFED, Director, Marketing and Communication
You are so amazing ! So well spoken too ! I’m so proud and lucky that you are my bestest friend ever. You are so strong ! Lots of love !! <3
Thank you, Chelsea! Lots of love right back to you. Thanks for being an awesome friend <3
Thank you for supporting Addison and bravery in sharing her personal story! We join you in applauding her. ~ Jodi, NFED, Director, Marketing and Communications
Your story sounded very similar to my own experiences with Clouston’s. Your soccer photo looked just like me as a kid! My two sons also have Clouston’s. I truly hope their adolescence is easier than mine was, even simply by virtue of their gender, which has less hair-related expectations,
Hi Kate 🙂 I know how you feel, trying to look into their future and just hoping that they will not have to endure what we went through. Our kids will have awesome Moms who know their struggles, so they can look up to us, and we can help them because we’ve experienced it <3
Thanks for sharing, Kate! Adolescence, for sure, can be tough. Those boys are lucky to have a mom who can help them prepare and support them. Know, too, that the NFED is her for all of you should you need a place to turn. You got this! ~ Jodi, NFED, Director, Marketing and Communications
Wow.. Addison..I too live in Canada but we have known for many years what we have..the same as yours..we have 5 generations of CS so we are used to the ups and downs of it. I’m so sorry you had to go through so much as a child..but always remember God made us and God doesn’t make garbage..you are valued for who you are..Love Becky Green
I also have some tips to help in some of the physical aspects..like cracked fingers to help you and your daughter. Feel free to contact me..🙂
Thank you so much! Right now for me, just keeping my nails as short as possible helps. And making sure to keep our hands from getting too dry. When Pippa says her fingers hurt even just putting a bandaid around her nail makes it feel better. I’m open to any and all suggestions:)
Hi, Becky. Thank you for reaching out and supporting Addison with tips on the physical aspects. If you ever would want to write an article for our blog with such tips, we’d love to read that and consider it for publication! Sharing info with families on what works for you can be helpful so we all learn. If you are ever interested, let me know! ~ Jodi, NFED, Director, Marketing and Communications
Hi. I also have c s. I’m 54 female from Massachusetts. It’s from my dad’s side. I always was told ectodermal dysplasia. But I see it’s definitely clouston syndrome. Thank you for sharing your story.
Hi, Linda. Thank you for sharing your story. Clouston syndrome of is one of the 180+ types of ectodermal dysplasia. So, technically, you have both! Ectodermal dysplasia is an umbrella terms. Let us know if you need any further information. ~ Jodi, NFED, Director, Marketing and Communications
Thank you for reading my story Linda 🙂 I’m happy that it was able to reach you and so many others. <3
Thanks for sharing, Addison. I’m glad that you found some answers. My granddaughter has Cloustons and if she’s asked why she doesn’t have hair, she simply replies that she has a “condition”. Her father, aunt, cousins and grandfather all have it so I don’t think she’s ever felt alone.
Hi, Marian. Thanks for sharing your family’s experience. Sounds like your daughter has a great response and a great support network around her. The NFED is here for all of you, too, if you ever need anything. Take care! ~ Jodi, NFED, Director, Marketing and Communications
Thanks for your reply Marian 🙂 I’m happy that my daughter has me to compare to now as well and can just tell others who are curious that she has Clouston. Just knowing what it is makes it so much easier, at least for me anyways 🙂 It sounds like your granddaughter is a strong girl with a good support network 🙂
Hi, maybe I have the same syndrome. I live in Germany. Do you have German roots?
I’m German and our Cloustons Syndrome can be traced back through at least 6 generations. I don’t live in Germany but my great grandparents lived there.
Hi, Tara. Thanks for sharing that you have a strong family history. Because it’s an autosomal dominant condition, we have found that many families can trace it back. Hope you are well. If we can help in any way, let us know! Jodi, NFED, Director, Marketing and Communication
Hi, Max. Have you checked out the other information on our website about Clouston syndrome? It may help you. Also, if you are seeking a diagnosis, we would recommend that you visit a doctor or geneticist. Good luck! ~ Jodi, NFED, Director, Marketing and Communications
A wonderful story told by Addison. I have Clouston Syndrome also but only found out the name of it 2 or 3 years ago and I am 72. My sister and brother have it also but my brother had normal hair until he was about 19. My sister has 3 kids but only one has it. My uncle ( my dad’s brother) has 3 kids and only the youngest has it. It is so strange how it goes through families. My dad’s father had it ( the fingernail part) but I know nothing beyond that. Somehow it made me feel not quite as weird when I could put a name to it. One thing I had never thought about until recently was how hard it must have been on my parents, especially mom never having the happiness in brushing our hair or curling it, only feeling bad that there was nothing she could do to change things. They did buy me a wig in 2nd grade which in 1954 was $900 then. Can’t imagine what that would be in today’s prices and they really could not afford it but they managed. I don’t know how they did it. Thank goodness for wigs.
Thanks for listening to my story. Best of everything with your little girl. Stay in place until she gets thru school because facing new classmates after a move is really hard.
Hi, Lynn. Thank you for sharing your story with Clouston syndrome! We are glad that you finally have a name for it. That alone can be empowering. Because it is a genetic condition, individuals with Clouston have a 50% chance of passing it to a child. That would explain why some people in your family have the condition and some do not. Not having hair is absolutely a personal and emotional experience for each person. That was quite an investment your parents made. Today, there are more wigs and at all price points. We are glad that you shared here. If you are interested in talking to more of our families affected by Clouston syndrome, we encourage you to join our private group for Clouston syndrome on Facebook. You can find it here: https://www.facebook.com/groups/cloustonsyndrome/. Also, if you have not yet done so, we encourage you to fill our this form so we can send you more information and provide support. https://nfed.org/join-us/ We are here to help and listen! ~ Jodi, NFED, Director, Marketing and Communications
Thank you Lynn! And thank you for sharing about you as well 🙂 It definitely helps to put a name to it, I agree! My daughter seems to be getting more interested in wigs. Some days more than others. She just turned 5 so she just wants to be like Elsa and Ana, and the disney princesses. When shes a bit older and if she wants one for school I will definitely get her a everyday wig. They do come at all sorts of price ranges these days. And we plan on staying put for many years here, so she wont have to be uprooted 🙂
All the best Lynn!
Reading this just breaks my heart because I know exactly how she feels. I, myself have clouston syndrome as does my mother’s whole family, from my grandmother, my aunt, uncle, cousins, brother, down to my daughter. We all have it! All the things you explained I have been through. When someone asks you if you have cancer, it really does hurt!! People staring with a disgusted look on their face. It’s hard… I work for a major cell phone company, handling people’s phones all day I constantly get stares. Kids were harsh in school…all of it… I’ve been through it as well. I, as a Male dont think it was such a big deal for us, I can pull off the bald look 😉 but I know for the girls in our family it’s hard not having much hair. My Moms in her 50’s and never had to shave her legs a day in her life so there’s that perk! Lol. There’s a bunch of us out here. I admire hearing your story and I wish you and your family nothing but the best!
We’re all different in our own ways! 😊
Hi, Rob. Thank you for sharing your experience. It’s not easy at all, is it? Thank you for reaching out and offering your words and support. The good news in all of this is that our families are never alone. You all have each other for support. ~ Jodi, NFED, Director, Marketing and Communications
Hi Rob, thank you so much for reading 🙂 I am so happy I found the NFED because it is people like you and everyone else in these comments, and in the NFED that I really wish I had met earlier in life. I laughed at the not shaving legs thing. Because I have said before that I am lucky in that regard as well 😂 all the best to you and your family too! If we both ever attend an NFED family conference at the same time, we would love to meet you 🙂