Most people who read this log, till now, were family and friends, but I hope there will come more, especially other EBAers.
Therefor I will introduce myself …
My name is Jetty, I am 49 years old, mother of two children. A son Bobby (23 years old) and a daughter Babette (18 years old). I live in the Netherlands together with Theo (my love) and Babette.
I have EBA since 1990, the first years they called it parapemphygus. In 1994 the diagnose EBA came.
The blisters were at first only in my mouth, then after a couple of months my hands were full of blisters and wounds. But it was not for long un till my whole body was with blisters. My mouth, hands, knuckles, elbows, knees, ankles and feet. I had cyclosporine for a while but my body seemed not to react. I had antibiotics for a year or 2, with that I was out of the inflammation but the EBA remained…
In 1997 I was diagnosed with cancer. The type of cancer is paraprotëinemie and I had a tumor (plasmacytoom) near my spinal cord. I had radiotherapy. The doctors were curious if my skin would react to the therapy. But it didn’t react at all. Al least that is what we thought. But after a while my EBA was gone (at least we thought). For a while I was without blisters and wounds. But they came back. The blisters destroyed the nails of my toes. And already one of my thumb nails.
At first I thought that the EBA was a reaction of a stressful life. (I was married with an alcoholic and was abused by him, had two children who were stillborn, was sick a lot and so on ……
Now I accept that my life is filled with blisters. I’m looking for other people with EBA (I never thought it would be so hard to find the other “happy few”) I would like to talk to them how there treatment is. What they do with there feet when they hurt to much to walk. Do you remove the milia or not? Things like that.
If there are doctors who read this log I will asked them “do you have the miracle cure for EBA?” If there are manufacturers I will ask them “do you have any garments for people with EBA that is soft enough for our skins”
Please react …………………………
mei 2005
Dear Jetty,
My heart bleeds for you. I know, I am not really the person you are looking for, but I could not let this go. I am so lucky that my Pemphigus is under control now, but I remember vividly the time when nobody knew what was wrong and my mouth hurt like hell and there were blisters on my body, who became wounds.
I wish you will find other people with EBA who can really help you.
Love,
Hermien
Ik hou van je 🙂
Rare reactie misschien, maar een beeeeeeeeetje liefde doet soms wonderen
Ik krijg er geen uitslag of blaren van dus dan vooral mee doorgaan lief 🙂
knap van je dat je zo helder kunt uitleggen wat er gebeurd is in je leven, het staat er zo simpel maar het was zo veel en zo zwaar en dat jaren lang, je bent een dappere meid hoor.
doei yvonne
Lieve Yvonne,
Jij weet als geen ander wat een strijd (en) ik gestreden heb. Je hebt ze (bijna) allemaal van dichtbij mee (mogen :P) maken.
Thanks for being a friend 🙂
My son-in-law has some serious EBA. My daughter would like to communicate with you. Is this the correct way? It sounds like you have a similar situation to him.
Hello Anita,
It sure is the correct way to get in contact with me. I allready send you a mail and I hope I can help your daughter and son-in-law even if it is only to write about our disseas and struggle with blisters.
Take Care,
Jetty
Hallo Jetty,
mijn naam is Linda, ben 37 jaar en kom uit Elburg. Sinds 2004 heb ik ook EBA. Het is begonnen met vel van mijn handen stoten, wat verder ging met blaren. Na eerst een dermatoloog te hebben bezocht, en hormoonzalf te hebben mee gekregen, wat niet hielp, wou ik een second opinion en kwam in Groningen bij het UMCG terecht. Na veel onderzoeken kwamen zij erachter dat ik EBA heb. Kreeg inmiddels blaren, op mijn handen, voeten, ellebogen, knieën en nu eigenlijk overal( ook tong ). Mijn huid is enorm kwetsbaar. Infusen heb ik gehad, retuximab, flebogama, verder medicijnen, pretnison, dapson, etc. Niks slaat aan. Alleen zijn de spontane blaren verdwenen, nu heb ik ze enkel door stoten, schuren o.i.d. Maar goed, knap vervelend ! vooral met mij hobby ” paarden ” en mijn hondjes. Maar goed jij zal er alles van weten hoe vervelend EBA is ! Ik hoop snel iets van je te horen, zodat we misschien dingen kunnen uitwisselen. Groetjes van Linda.