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32 Brighton Street
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My day is like no one else’s you know. Unless maybe you know someone
else with a rare skin disease called Epidermolysis Bullosa! There are a
lot of us out there, although the incidence of EB is 1:50,000 – not rare
enough for me!
I start my day with an assessment of how much damage I did to myself
during the night. EB is a cruel disease which is diagnosed at birth and
changes its effects on a daily basis. Because my skin is so fragile and
blisters easily, my skin rubs off at the slightest touch, bump or fall.
I am covered with wounds over 50% of my body, and bandages everywhere
except my face. It is a tough way for a little kid to live.
My morning starts with a bath and dressing change which takes two
nurses, Mom or Dad, or a volunteer about an hour. This is torture for me
as I cannot sit still for that long and I am in pain. They unwrap one
part of my body at a time, assess the skin, wash and rinse me and then
rinse my skin with bleach or vinegar solution to kill the bacteria that
has colonized my skin. My skin is then dried and antibiotics and
moisturizers are applied. I am then wrapped in special dressings from
Sweden made of silicone and covered in gauze and tubifast. It is like
living in a sauna. But I have THE most wonderful nurses in the world:
Diane, Nicole, Pat, Theresa and Ellen, and they make it all as easy for
me as they can. I love them to death and my family gives thanks for them
Once all this is done, my day of medications, therapy, oral hygiene and
more bandaging continues. I have a PT, OT and Speech Therapists who come
during the day to work on my hands, feet and mouth which continues to
blister and hurt. On those days, I cannot eat or drink until the blister
on my tongue pops – this is very painful as you can imagine.
If I am having a good day, there will also be no blisters in my eyes.
This is THE most painful thing I deal with. There is no treatment for
corneal erosions, as they are called, so I must sit quietly with someone
I love and keep my eyes closed and take my pain medications until the
erosion heals and I can open my eyes again.
After my day nurse leaves, it is play time with my siblings, Teague and
Kalilla, and time to watch my favorite movies. My evening nurse or Aide comes
later in the day to re-check my bandages, prepare my medications and
take care of the enormous job or ordering and stocking medication and
supplies. I spend many of my days at Columbia Presbyterian where I am
followed by Dermatology, Infectious Disease, Pain Management, G.I./Nutrition,
Dentistry and Hematology. That can really keep a guy busy.
We are waiting for a day for me that is nothing like the one I just
described. A day free from pain and suffering and worry. There is no
cure for EB at this time, only bandages and pain medications. If gene
therapy & stem cell research ever becomes a reality, there is hope for a cure. Research going on in
Stanford Ca. will go to human trials in a few years and may have hope of
a treatment for RDEB. Until then, we are spending our days praying for a
cure and hoping I survive the infections and anemia of childhood. I need
a cure well before my first bout of squamous cell carcinoma, as this
will surely kill me.
If it is in your means, please help spread the word about EB, help
increase EB awareness, visit my website for updates on me and the New
York DebRA Support Group, wear an “EB Awareness” bracelet proudly and
loudly, and please remember me and my other EB friends in your prayers.
Tomorrow is another day and my family continues to hold out hope for a
better day for me….