Christine B. - Conception Bay South - 2018
"I don’t know that I can say I was happy to be born with this rare skin disease called Autosomal Recessive Congenital Ichthyosis Erythroderma (ARCI-CIE), actual formal diagnosis at age 20, 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 ARCI-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 will be 60 years old this year and reside in the Town of Conception Bay South, in the province of Newfoundland and Labrador, Canada. I have a wonderful husband, 2 beautiful children, who are now grown; and I have the cutest 5 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.
ARCI-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. I am a Municipal Councilor in my hometown, I sit as a board member on two volunteer boards: The Conception Bay Family Resource Program and the Canadian Skin Patient Alliance. I am also a Big Sister to an amazing young girl Chloe and I also volunteer with other community organizations. I have travelled, I love to go RV’ing and I love to spend time with my grandson. If anything, having ARCI-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 ARIC-CIE wasn’t contagious. There was only one 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 ARCI-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 ARCI-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 Findlay, a blog writer from Australia who has a very rare form of ichthyosis, 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 so I asked each of them to write down some thoughts about me and my skin condition. Below are some excerpts":
"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 almost 39 years, married for just about 37 years."
Christine's son (33 years old, single dad of a 5 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 faze 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 (31 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 smoldering 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 it 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 (retired teacher who actually taught Christine and coached her in volleyball in high school):
"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-colored 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 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.
"Miracle Baby - December 25, 1958.
Born, a baby girl, 8 pounds, 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 colors.
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 grandmother; 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 ARCI-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."