O.K. so tonight I saw Gina of the blog Jonina and was chastised for not updating so frequently these days. I know, I know, I've been terrible about this but here is the reason, I have been totally engrossed lately in these projects, making baby blankets and sewing burp cloths, it has severely interrupted my blogging time. So that is what takes up my free time, which is minimal in the evenings as I am mom to 2 adorable girls ages 2 and 4, a wife and I try to keep my house in a somewhat recognisable shape. And here is reason #2 why I suck at blogging lately, about 2 weeks ago Kate said "mommy, when I get bigger can you and daddy make these blisters go away?" I was almost in tears after she said that. Most of you know but for those of you who don't Kate has a skin condition known as epidermolysis bullosa (EB), it causes her skin to blister in response to friction or trauma. The heat makes it worse and as we are entering the heat of summer it is beginning to get worse. There is no cure for EB, just treatment of the blisters which includes popping them as they occur. It sounds strange as it goes against everything most people know about blister treatment which is not to pop them, the trouble with EB is that the blisters fill with fluid and if they are not popped they grow, Kate once had one that got away from me and grew so big that it encased the whole of her little toe. Popping blisters on a 4yr old is not an easy task either, she does not like it, sometimes we have to resort to doing it while she sleeps, it is a heartbreaking disease and so lately I have been on the DEBRA website reading their forum chats, on the yahoo ebcalifornia group trying to find yet more info and trying to see if anyone has a referral to a good Dr. that knows something about EB, thats another frustrating thing, its quite rare and a DR. or nurse can go their whole career without ever seeing it, so as it stands I haven't yet found someone who has seen it before. Lately Kate has got a white patch on her tongue, I'm pretty sure its a blister but she had it when she was about 9 months old and it stayed for about a year, its now back and I am a little concerned and want to know that its O.K., there is a type of skin cancer that people with EB are more susceptible too its called squamous cell carcinoma, the ones with a more severe type (RDEB) are highly at risk, so far Kates type is most probably simplex but is unknown as 2 skin biopsies were both incomplete. Anyway, lets just say this has been occupying my time lately, I love my little girl and it pains me that she has to suffer, even worse because somehow Eric and I gave this to her. To end this post I will end on a good news, the University of Minnesota has conducted bone marrow transplants on two boys with RDEB and the results are promising, read the full story here Nate Liao, this moms drive to find a cure for her boys is remarkable, she is absolutely my hero right now, watch the video. I have also been reading that people with the milder form like Kate are taking Valtrex which is reducing their blisters, ever heard of Valtrex? its for genital herpes but the theory behind one guy being treated with it was if he had blisters elsewhere how would they be treated, and so his nurse practitioner wanted him to try it and it worked, there are others that have tried it too and it is showing improvement for them also. Anyway, thats the good news. Let me also say that Kate is an amazing little girl with a wonderful spirit, she rarely complains about what she has to go through even though sometimes she is in obvious pain.
If anyone wants to help you can donate money through the DEBRA website or if you live by a Ralphs you can sign up for community contribution with your Ralphs card, they will donate a portion of what you spend to EBMRF (EB Medical Research Foundation), you will need the NPO #81963 and every time you shop at Ralphs you earn money for EB.
Also, stay with me, I have a good idea for a new post coming soon!!