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Jennifer Lyric Bolles Harbuck ~ USA
My name is Jennifer Lianne Bolles, although I go by Lyric, and I was born in 1973 and diagnosed at birth with RDEB. My left foot and hand were completely raw as well as my mouth. My tongue was (is) completely fused. The dr's told my parents "don't name her as she won't live through the night". My family sent out the word for prayer and they and their church were all praying for me : )
The dr's were wrong, but still pessimistic and told my parents I wouldn't live the next few days...few months...definately not till 3 yrs, then 5, then not to teenage years. What the dr's DIDN'T know was that my sub type, Inversa, is a less severe form of RDEB, and while I still do have very severe areas, they are all areas that are hidden by clothes or are internal.
I have always had severe dental/oral involvement. As a baby my mom had to feed me with an eye dropper as I couldn't suck a bottle or breast feed b/c of the blisters in my mouth. I have always had esopgeal dilitations in order to eat, but i still had severe issues with choking.
My mom diligently wrapped my hand, fingers, foot and toes every day for 8 months so they didn't fuse or contract and I am grateful every day for her dedication. Because of her hard work I have fully finctioning hands and feet!
Childhood was difficult. My father abandoned us when I was three so my care fell entirely to my Mother. there was NO support groups then and DebRA of America was a brand new organizition. My had only my grandparents (her parents) for comfort and support.
She always did her best for me and made sure I had the best medical care she could find. I spent 3 months every year at Chapel Hilll Hopsital in Chapel Hill, NC until I was 8. I had countless esophageal dilitations, biopsies, blood draws and barium swallows. I was a handful and a bit of a brat ; ) I didn't like shots or needles so when they would tell me they would be coming 'later' to do that I would go hide in the NICU and talk to the babies : )
Everyone new me so I was allowed to look at the babies and even hold some, with parent permission of course. Ultimately, the dr's would always find me ; ) and take me back to the children's floor. I had the run of the hopsital and was often riding up and down the elevators to visit people in other areas of the hospital. All of the staff in the childrens' and infant wards knew me by name and I was allowed to do almost anything I wanted.
At night, when everyone else was asleep, one of the male nurses would do wheel chair races with me until i would start laughing to loud the other nurses would tell us to hush, that this was a hospital not a play ground : ) then he would let me get an ice cream or jello from the floor fridge and send me to bed.
I went to Montesorri school as a young child, which was wonderful, but still difficult. It was very hard to make friends as they didn't understand EB. The thing I remember being asked the most was "what's wrong with you? Were you burned?" and i would explain that, no, I had EB, a skin disorder than made my skin come off and I had to be very careful with everything I did. The other thing I told people the most was "Don't worry, I'm not 'catching', EB is genetic".
My mom never put any limitations on me and I was allowed to do what I wanted, always understanding that I had to be careful. I knew my limitations and didn't push them...often ; ) I ate what i wanted to, although it took a LONG time to do so as chewing and swallowing were so difficult. I would often put too much food on my plate and was always told "my eyes were bigger than my stomach"...what my family didn't know or understand was that I put so much food on my plate because it took me so long to eat that when I was done with my small portion and ready for seconds, there was no food left.
Once I stopped going to the hospital every summer I would spend that time with my grandparent's in FL. They had a large portion of wooded land with a creek that ran deep into the woods, a huge yard and a massive vegetable garden. I would spend summers playing with my cousins, walking in the creek, picking vegetables in the garden and running, barefoot, through the woods. I got nicked plenty of times, being barefoot, but there was no better feeling than running, jumping and dodging through the woods. I knew where every tree limb or root was and my feet would always avoid them, my long, starwberry blonde hair streaming behind me as the wind whipped through it. I would spend hours, every day, roaming the woods and the creek. It was my favorite place to be as I was truly one with nature and, also, completely accepted BY nature.
The 'woods' didn't care that I had EB. They weren't worried I was 'contagious'. They didn't stare at me and point or whisper about me behind my back. Nature just loved me...for me, and I loved nature back. I still love being outdoors and try to spend as much time outside as weather permits. I sill go 'creekwalking' when I find one, climb trees and walk barefoot in the grass. I love the ocean as well and since my grandparents lived on the gulf coast I also spent a lot of time playing in the sand and swimming in the salt water. I found out, early on, that the sea water helped heal my blisters and would often go soak in the water when they were bad.
I didn't have all the bandage supplies then as I do now. All I had was Telfa pads, cotton gauze pads, vaseline and paper tape. My skin often stuck to my clothes and I would have to soak them off in the tub every night. Most of the time I went without bandages as they did more harm than good. That was difficult as I would get a lot of unwanted attention.
As a child the doctor's that cared for me were fantastic! They were curious and WANTED to learn about EB, and I was happy to be poked and prodded since I knew I was helping other kids with EB. As i grew up the doctors became less and less interested in it until, eventually, they didn't care at all.
I began having severe difficulties just being SEEN by a doctor as they didn't believe EB was a 'serious' issue. They didn't believe me when I told them I couldn't swallow pills because my esophagus is too small. They didn't believe me when I said having a BM HURT so bad that it took my breath away and made me cry in agony.
They refused to consult with EB specialists and my medical care declined becuase of it. I would beg them to do research and when they wouldn't I would bring it to them myself. Desperatly trying to connect with them so I could receive appropriate care. EVERY time they ignored the sheets of info I brought them, not even bothering to look past the first page. When I would try to encourage a conversaition with them, about EB, using proper medical terminology, they would become rude and dismisive, demanding to know "where I learned such words".
I was met with arrogance and ignorance at every physician's door. In a desperate attempt to be seen by pain managment I asked my dermotologist for a referal, certain that he, of all people, would understand. His response was "I've never referred a dermastology patient for pain management and I'm not going to do so now!".
Finally, after a year of searching, I found a doctor that gave me a referral for pain managemnt. I went to this new doctor full of hope that he would help me with the excruciating pain I was dealing with. He prescirbed Dilaudid, a pretty potent pain medication. It did not work. It made me groggy and caused mental cofusion, but it didn't really help with my pain.
When I went back to talk to him about it he refused to treat me anymore saying that Dilaudid was a very strong medication and if it didn't help me then he couldn't help me. I was shocked and confused. I just stared at him, tears of defeat streaming down my face. I begged him to help me. Begged. His response was to say that if I didn't leave his office he would have security escort me out.
I left his office and never looked back. He assumed I was trying to get drugs for recreational use, not understanding that those with EB have very wacky body/brain chemistry and that our bodies simply don't absorb or process many medications the way others do.
It was just about that time that I was scheduled my first EB clinic visit since childhood. I had never received pain meds as a kid, not even tylenol, unless I had a fever, and was only given xylocaine gel or "magic mouthwash" to help numb the blisters in my mouth. I loved the mouth wash but the gel only lasted a few minutes so I only used it when I was truly desperate.
I went to CCHMC (Cincinnati Children's Hospital and Medical Center) and saw Dr. Anne Lucky and teh rest of the Cincinnati EB team. They are wonderful. They listened to me. They believed me. The treated me with dignity and respect. At that time I was living in FL but I knew that wanted to be in Cincinnati.
During that time my life was changing, for the better. My marriage ended and I no longer had family or friends in FL as they had all moved away. I made the choice to move to Cincinnati to be near the doctor's at CCHMC's EB center and I have never regretted it.
I have lived here for almost two years now and I love it! I have a wonderful church family and many friends and organizations that I am now involved with. So many wonderful people are now in my life and I love all of them! I am happier now than I have ever been and am so very grateful and appreciative to the EB specialists that care for me at CCHMC!
Jessica Schwoerer ~ USA
My story began when my beautiful little boy was born. Jonathon was what at first seemed to be a perfectly healthy little baby boy. He was born with a callus on his big toe, but that was the only abnormal thing. That all changed very quickly. He was born at one am and within twenty four hours would be taken by ambulance to a larger hospitals NICU. First they began doing the normal heel sticks for newborn screenings. My babies perfect little feet became completely mangled. They are still shaped oddly from all the damage to his feet. These tests revealed kidney function issues.
He was put on an IV fluid drip. My baby was very lethargic, dehydrated and would not eat. As skin continued to get worse with blisters appearing around his body and kidney tests continuedu revealing more severe issues, the decision came for a middle of the night transfer to an amazing hospital. I was a mess i called my father to come back to the hospital and could barely get out the words.There he stayed for five days while they researched to find out why his skin was doing this and how to treat his kidney issues. I will never forget this one med student who was captivated by his disorders.
Then came the diagnosis..EB Simplex. I said what is that, what do we do, and could you spell that for me. They explained what EB is, told me nothing we can do, and it took me only about a month to figure out how to correctly spell it. They said they had never seen it before. I spent the next two months going to specialist to get his condotions under control. I read everything i could find about EB. The doctors did not have much to give me. Through all my reading i was scared out of my mind. What if its not this Simplex form? What if my baby dies? I am a single mom and have always been a single mom.
How will i deal with this by myself? How can i afford his care? It was scary. Through the years we have had very bad times and very good times. Crawling was the worst for EB. Doctors that would say what did you do to him? People that stare. Isn't there anything you can give him/do? I despise that question it makes me want to lose my mind. If there was something i could do or give him don't you think I would. He is five now and boy there is no stopping him. He keeps going through pain that most people would not be able to imagine. He is my world, my heart, and my all. I could not imagine life any other way. This is my little boy. His skin is like a butterfly, but he is stronger than any thing else in this world.
Zoe Newbon ~ UK
Born sunday 25th march 1984 at 3.20. Put into special care immediately as both feet were red raw and the front of one leg, Zoe had been laid with her legs crossed and had rubbed off the skin. The nurses in special care fed her by bottle, which caused her gums and tongue to blister, they had no idea what was causing the blistering. Several doctors came in to have a look at her, including one who came to tell me when she was a couple of hours old that she had two club feet and would probably never walk.
The nurses started to feed her milk with a cup and spoon! Feeding took about two hours. When she was a couple of days old they thought it would be a good idea to prevent friction, so zoe was laid naked apart from a nappy on a sheepskin mat, pinned down in an incubator by patching bandage to her wrists and ankles and trapping them in the little incubator windows.
Zoe was almost two weeks old when a doctor Hambleton came to see her and diagnosed EB, we were told that skin samples were needed to test for a proper diagnosis. Appointment was made for zoe to be taken to St John's hospital in London for samples to be taken four days before the hospital discharged zoe. So we had to travel to London with a four week old poorly baby with baby food, nappies and dressings.
TBC....
More to follow...
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