Meet some friends of mine PT.1

Be sure to keep scrolling down for more friends stories.....

Melissa Krawiec-Curtis ~ USA

I was born September 29, 1977 at Vassar Hospital in Poughkeepsie, NY. My father has Epidermolysis Bullosa Simplex, and a day or so after my birth it was evident that I too, had EB. I was told that I was a happy baby, never really protesting much to the necessary routine that accompanied my EB. It was daily baths, blisters and ointments. Soft clothes, moccasin shoes and taking it easy. I always felt different, but was never treated any differently. My parents instilled in me that I was as normal as any other kid…I just happened to get boo-boos. They always told me I was special, unique and blessed, and that there was nothing terribly wrong with me. I remember always having to explain that I was not contagious, that being my friend wasn’t going to make you get sores. To my surprise, those that mattered accepted me whole-heartedly. To this day I have the friends that I have had since I was 4 years old. They say they saw a little girl on a swing set and wanted to come over and play…that it didn’t matter if I had blisters or scabs, that my soul was strong, and right from the beginning they didn’t even notice my bad skin. I remember always being self-conscious…always trying to hide myself, because I was pretty used to the stares, even if they were completely insignificant. But, when I look through the family photo albums, all I see is a smiley, happy, exuberant child…I don’t see the insecurity I have lived with most of my life. And, that is where I strive to be today for my son. Filled with the positive affirmations for myself that I am special, I am worthy of life’s precious moments, and that EB is a part of me, but it is not who I am. I want to instill such adherence to life’s possibilities for Liam…I want him glued to success and happiness…I want to be able to give him the support and comfort he deserves!

I have been told that words are one of my greatest assets, that I have a gift of having a way with them. I suppose that instead of sports and fashion shows I turned to artistic self-expression…being the rebel that I am, I enjoyed placating the negative parts of my existence for so long. I tried being proud of myself for the tough, hardened exterior I portrayed. It was almost as if EB had given me a chip on my shoulder, my thoughts existing as if I had no regard for who I really was. I was a rebel, a lost cause. I was troubled and destructive…damaged, not up to par. I did what I wanted, when I wanted and I didn’t let anyone stand in my path. This trait of defiance actually fared well for me as life moved along, but as a young adult I felt so lost. I really felt like I didn’t fit in anyplace…that was hard. I achieved many things in my life, even though I always felt a sense of inadequacy. I went to college…first for English. Decided that Journalism wasn’t for me. I went to school to be a Professional Chef…that didn’t work because it was too hot in the kitchen. Then I found my calling…I took up some medical courses, and became a nurse. I love my career…my background in dealing with medical issues has helped me immensely. Not only do I have acceptance and compassion for all medical afflictions, but I also have extensive knowledge in wound care and treatments! (Two very intensive and involved fields when pertaining to EB!) I suppose I always took an extra special interest in the medical field...always wished that I could make the pain of those that suffered more bearable. I have found through working with others that the best medicine truly is laughter and compassion. Being able to relate to the struggles of others has made me an awesome nurse. I am proud and aware of the person I have become…I have faith in my ability to help others, and it has made me overcome things that I never thought were possible to hurdle through! EB has made me the tolerant, compassionate, outspoken and perseverant person I am today.

I could go on and on about how different aspects of my illness have impacted other areas and experiences, but all in all, the only thing that really matters to me is that I have been given the chance to raise an extraordinary little baby boy, my son Liam. Liam also has EB. As much as I refused to consider the fact that he had a 50% chance of carrying our EB gene, I was confident in the possibility of him being EB free. On October 19, 2010 a very special little man was born to my husband and I. Liam David Curtis was born at 1:26pm, weighing 9 pounds 9 ounces and measuring 22 inches long. He was so perfect. His little chubby body was free of blisters and denuded areas. I was ecstatic…I believed that I had proved my intuitions correct. 24 hours later they brought him from the nursery to show me a blister on his sacral area…and I knew instantaneously that it was EB. He was afflicted, and my life had forever changed. My hopes and dreams weren’t shattered, my plan wasn’t askew…things were just altered, aspirations remained…modes and modalities were just adjusted. I knew that there were no two more appropriate people on this earth to take care of that little man than my husband and I. I am grateful that I have been given this butterfly, I am proud that I was chosen to take care of him and raise him as carefully as I can. He is the sweetest, adorable and snuggly little man…he is more than I could’ve ever dreamed of! His EB is really bad on his feet right now. His fingers are also pretty sensitive. I have to drain blisters every few hours to keep them from spreading. He doesn’t exactly enjoy this process, but then again, I’m sure I didn’t either. He is still very young, so I am not sure what I will be dealing with as he grows up a bit. I still have crawling and walking to get through!

Having EB has made me a sensitive, caring and compassionate person. It is evident in the 3 months that I have been a mother that my EB has given me the gift of experience and sympathy when it comes to my son. I will be able to guide him through his tough times, times when he thinks that no one understands. I will be there for him when he can’t play the sports he would like to. I will be there when he cries “Why? Why me?”. I don’t claim to have all of the answers. But I have come to a place in my life where I accept that I am different. And, I am…by far…different. I think it made me stronger, more resilient, more accepting and more in tune with myself. It has humbled me, stopped me from getting ahead of myself. It has been challenging and painful, emotionally and physically, but I have things in my life that others don’t. I have friends that have seen me for me since the beginning. I have family that has supported me through whatever it has been that I needed to go through. I have a wonderful husband who accepts and loves me for who I am. I have a son who is special, just like me. I admit to my uniqueness, I know that I am blessed. EB is my skin disorder…
Melissa is who I am.

Jamie Gooch ~ USA

I was born in 1980. I had blisters on my thumbs, my fingernails and my toenails were black. They knew something was wrong just not sure what. I was born at a miltary hospital. When i was two they finally reffered us to a hospital outside of the military, then we got the diagnosis of Eb. It wasnt til i was 9 when i met dr. fine and he did a biopsy that we got the definite diagnosis of Eb Simplex ~ subtype unknown. Then when i was 26 or so my derm wanted to do another biopsy cause my symptoms were getting worse. That came back JEB-nH. I had another biospy to confirm it 2 years after that and it came back the same. So i dunno if the 1st was wrong or i just got worse.

I have never been married, my daughters dad decided he didn't want to be around for awhile but is back in her life now. I was a single parent for 7 years til i found someone who accepted me for me, I have been with my fiance for 6 years. The 7 years i was a single parent i had the support of my amazing mother and stepdad as my dad died when i was 13years old.

I didn't have any eb related problems with my 1st pregnancy. With the last one i had problems staying hydrated and went into labor early a few times. The only problems was when i delivered and the placing of the IV. Life is hard with Eb and non Eb kids. It took awhile for my eldest to understand that i couldn't do stuff like other mommies. She is good now and yells at me if i don't take care of my blisters and wounds, she has even helped wrap a few times. I found out that i get more exhausted than normal, chasing around an 18 month old boy.

Lauren Grace Simpson ~ UK

I was born in 1996 in north wales at Glan Clywd hospital, I weighed 7pounds 6 ounces. I lived the first 8 weeks of my life in SCUBU I was the biggest baby there. When I was born my mum or my dad hadnt any idea about Eb or what it was? At my birth there was a male student doctor who had seen Eb before, he said to my mum it could be Eb but I'm not sure, that's when Jackie denier came from Great Ormond Street hospital to do a skin biopsy,  it was confirmed I had RDEB.

The begining of my life... I didn't feel any different from any other kids or as I knew I didn't look any different. My mum and dad didn't treat me any different to my older sister (Eb free). I'd run, jump play just like any other child. My dad did my dressings when I was little, my mum used to comfort me and distract me from what my dad was doing, popping blisters and getting dry skin off etc. When I was 7 my parents split up and we lived with my nainy & grandad. At this point my grandad went from being my grandad to my dad. He helped my mum do dressings, blisters etc. I loved my grandad he was amazing and I could talk to him about anything.

As I got older I became more self conscious about my hands and legs and I would always keep my hands covered by sitting on them. I would always wear trouses even in the summer and I wouldn't wear dresses or skirts. I would say my Eb is pretty mild and I haven't had much trouble with it really. I had a Mickey button fitted when I was 2yrs old to have my medication through it. My dad decided I wouldn't have food supplements through it as the other Eb kids, they had the feeds and they wouldn't or couldn't eat. My mum and dad didn't like the sound of that, but this has become a big set back for me because I am underweight. I weigh 23kg and I am 15yrs old. This has a knock on effect on everything and I refuse to take feeds through my Mickey button as I prefer to eat but it's not enough, its only enough to heel my wounds but not to put on weight.

I've had a bad run these last couple of months as I have had needed a blood transfusion and a throat dilation my 3rd-4th one in 15 years not to bad. I also had a wound on my foot that wouldn't heel so this ment a skin biopsy. This was a big scare for me as I lost my grandad to cancer two years in July, but thankfully the biopsy came back clear and it turned out it was just a stubborn sore that needed a little TLC. It is doing really well and is nearly heeled up now.
I don't have ANY pain relief for dressing changes or anything as I have a VERY high pain threshold. I don't think it as that, it's just what I have to do COPE. I may seem really strong on the outside but I panic ALOT.

Now I'm older I do my own dressings, just the little ones, not the main ones. I pop blisters and I try to do as much for myself as much as possible as I don't like asking my mum because she has so much to do. As well as help me she also has diabetes herself, she'll be having a hypo while still doing my dressings. My mum helps me with ALOT of things and there isn't enough love in the whole world or nothing I could buy her to show her how thankful I am for her and how much I love her.

Since my grandad past away I've been struggling as I used to talk to him ALOT and any worries I had I would talk to him but lately I seem to be holding it back and it's just building up. I have my little nephew though and he's the one that has kept me going through these last couple of rough months. I leave school soon and I HOPE I'm going to college to be a medical secretary so my life's looking up. We all have our ups and downs but this down seems to of last for ages. But every things on the up at the moment and I hope it carries on for a quite awhile now.

Sara Schnick Love ~ USA

My mother, Marie, was born in upstate New York in July of 1955. She does not know much about her biological mother aside from the fact that she was in her 30s, was not well acquainted with the father of her child, was eb-free, and was not interested in caring for a child with eb herself. The diagnosis came not long after birth – a biopsy was done leaving a permanent scar on her foot and the prognosis was grim – she was not expected to live beyond the age of four. My grandmother was a nurse who often provided home foster care to children with poor prognoses, and she happily took my mother in. She had no biological children, but had an adopted daughter who was 14 at the time. My grandparents were rather old to be adopting an infant, but due to my mother’s short life expectancy, they were permitted to legally adopt her.

As the years passed and her condition improved rather than deteriorated, it became clear that the initial prognosis was incorrect.  I am convinced, though, that had my grandparents not adopted my mother, she would have contracted an infection in institutional care. I firmly believe that they saved her life. Mom never talked too much about how EB affected her childhood, aside from two anecdotes that I recall. I know that she was excused from school when the students were given their smallpox vaccines for fear that the weakened form of that disease would infect my mother through her open blisters. I also know that once when she had some blisters in her mouth a teacher grabbed her face by the cheeks rupturing the blisters.  After a scathing interaction with my grandmother, that teacher never touched her again. I know that by adolescence she largely “outgrew” the EB symptoms aside from the complete lack of enamel on her teeth and occasional blisters from bras, bugbites, and waistbands (particularly in the summer)

My parents met, married, moved out to Oregon to allow my father to pursue his PhD in physics, and decided to have children. They knew that their children would have a 50% chance of inheriting Mom’s skin, but decided that they were up to the challenge to raising a child with EB. I was born in July 1984 without visible blisters, but when the skin fell off my toe from where I had rubbed it against the side of my bassinet, it became clear that I had inherited EB. My sister, born 2 years later, is EB free.

I have heard stories of my infancy – sleeping on a sheet over a sheep’s fleece because I was allergic to the oils in the wool, spending much time hanging out on a pile of blankets with no diaper to allow blisters to air out and dry, various experiments by my scientist father attempting to minimize friction and prevent blisters. I know I did not walk unsupported until age 3 and was quite humorously cautious moving from piece of furniture to piece of furniture carefully judging the distance from one to another reaching out for the next support without letting go of the one currently supporting me.

By the time I started school, I had learned an almost nursery-rhyme reply to the question “What did you do to your arm/hand/leg/etc.?” Or, “Eeeeeeew!  What is that??!” depending on the age/level of tact of the asker). I would say “I have a skin condition called Epidermolysis Bullosa. It is not-catchy, I got it from my Mom.” Generally people would be impressed that such a young kid was using long medical language and would be satisfied with that answer. Sometimes people would ask follow-up questions which I would answer in a very frank, matter-of-fact kind of way. I don’t recall it bothering me much.  Some people had blue eyes, some people had red hair, I had blisters. It was just the way I was.

The only times I remember being in pain from EB involved trying to remove socks and tights from blisters they had stuck to. My parents did not know of any alternative bandages, so mostly I used gauze smothered in Vaseline or antibacterial ointments. Oftentimes these would get stuck to the blisters and make things worse, so I was generally left unbandaged to let the wounds air out. When I stubbornly wore tights or tall socks despite blisters, I would spend a lot of time soaking them off, but it still stung a lot.

Frustrations from EB involved limited shoe options, severe repercussions from skating (both roller and ice), and not being able to swim when I had infected blisters. I had clearance from my doctor to swim if all of my blisters were scabbed, but not if I had open or infected ones. I often thought that was quite unfair and would spend a lot of time in my dehumidified room willing my blisters to heal enough that I could swim. Like my mother, I largely grew out of most of my EB symptoms by the time I was in high school. I still have my deformed fingernail on the pointer finger of my left hand, am seriously embarrassed to have people touch my calloused feet with their weird tiny toenails, and sometimes blister from the same things my mom does.  (Underwire is not a friend!) I had never encountered anyone who had heard of the condition let alone anyone else aside from my mother who had it.

When I went to college, I got sick and went to the health center. There, I met the first person who knew what I was talking about when I named EB. The nurse practitioner had cared for a baby with severe EB and was familiar with the condition. It was so weird conceiving that there were really other people out there dealing with blisters like I had. I mean, I knew some basic information and that there were other forms out there, but had never encountered anyone else with firsthand experience.

Another life-changing experience happened to me during college when I met my husband, Ryan. I was upfront about my skin and my desire to have children. He was aware of the odds, but agreed that my life seemed pretty full with EB in it, and you never really know what can happen when you have kids. We got married in 2008 and had Wendy in June of 2010. By the time I was pregnant I did not even really identify with EB, it was such a minor part of my life. Faced with having an infant with the severe blisters I only vaguely remembered from my childhood, I became a little afraid. We did not have any testing done, but determined we would assume the baby had EB until proven otherwise. I found the softest diapers, told people to avoid exposed elastic in baby clothes, and tried to find information about nursing with EB. I was sent to the Debra website, but was a bit scared by the online information google searches had turned up in the past, so did not check it out very carefully.

We took the free childbirth classes offered by our hospital, which ended with a tour of the maternity facilities. I was very anxious to make sure NO ONE came anywhere near my child with any kind of adhesive until we were 100% certain she did not have EB. I did not want her to get unnecessary blisters or to have to spend more time in the hospital than a non-EB baby. Already I did not trust anyone aside from myself to understand her skin and care for it properly. Imagine my surprise when the nurses on the maternity floor were all quite familiar with EB – they had had a baby born there 4 years earlier and still clearly remembered what the condition looked like and what precautions needed to be taken.  Some of the nurses were actually still in touch with the family. They took my chart and put “NO ADHESIVES – POTENTIAL EB” all over my information and assured me that no tape would touch my child. That took an awful lot of stress off of my mind.

Wendy was born via C-section on June 23, 2010. I heard the doctor exclaim “Look at all that hair!”  Followed by “Oh, look at the thumbs. Looks like she got Mommy’s skin.” I remember being completely unsurprised, but feeling a letdown at that last sliver of hope that she might escape EB slipped away. By the time we left the hospital her perfect little hands and feet were quite covered with blisters. She had some on her face from rubbing her mitten-covered hands there, and had a few in her mouth. The doctors were concerned that her cry was a little hoarse, but my Dad told me not to pay them any mind – I had sounded just like that as a baby and there was nothing wrong with my throat. She was also the most angelic, perfect, wonderful little person I had ever met.

I gave the nurses my email address and asked if they would send it along to the family they had mentioned with the little girl with EB. By the time I checked my email at home, I had a message from them. Mother and daughter came to visit me and brought me a bag full of wonders I had never been introduced before.  They gave me a starting supply of Mepilex Transfer, Border Lite, Tubifast, a seamless outfit, and a lot of advice. I honestly do not know how I would have gotten through the first weeks without them. Armed with new information, I knew what to ask for from the pediatrician and dermatologists. I felt ready to take this on. They also introduced me to the Facebook EB community, which has allowed me to connect with other people with EB for the first time. This is the blessing my daughter gave to me – not only making us into a new kind of family ourselves, but pushing me to find this new extended EB family I never knew was out there.

Yes, it is heartbreaking to hear her scream when we take her out of the bath because she knows it is time to take care of her “bubbles.” Yes I would do anything to take her pain away and make her feet look “normal.” Yes, it was terrible to see her struggle to learn to walk so she could keep up with the kids at daycare and to then wince watching her walk knowing what her feet look like under those soft Elmo slippers.  But this gift she has given me is incredible – she is an amazing, happy, funny little person that I am so beyond lucky to have been entrusted with. And I am so glad she will not have to grow up feeling like she is the only one in the world out there like her.

More to follow............

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