A little of what the Thompson's are up to.

Friday, June 13, 2008

EB in detail

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!!

12 comments:

Janel Waters said...

Please come join ebfriends.ning.com - all the members are either EB sufferers, parents or caregivers. there is so much information there and suggestions for care etc.

We would love to see you there.

Rebecca said...

Kate can have my bone marrow if she needs it!

It's hard to see such little kids go through so much pain :( I can't imagine what it would feel like having your own child suffer and you can only do so much and not make it 'all better'.

Our thoughts and prayers are with you!

English Garden said...

I don't think Kate's condition requires anything as drastic as a bone marrow transplant but thanks for the offer!!

gay said...

good to hear you elaborate on that, claire. it's very touching to hear you talk abuot your daughter n such an open and honest way.

beth said...

Claire - you're just such a good mom! Kate is the cutest. What a strong little girl.

Crazy Lady said...

Kate is awesome and I can't imagine what that is like. And she will probably only get more verbal about it cause she is so dang smart. Has she said anything about Sara not having blisters?

Just to clarify, why do you guys think you gave this to her?

English Garden said...

She has never mentioned about Sara not having it but we were watching the French Open on TV and there was a shot of Mats Wilander, (former world No.1 tennis player, 7 grand slam titles) his son Has EB too and I told Kate his little boy got blisters just like her, she was pretty intrigued about it and kept saying "his little boy gets blisters like me"

Why do I think we gave this to her? because its genetic and maybe its just the parent in me....

Jon & Gina said...

Well I hope I didn't make you feel too guilty to update your blog, I just love reading it! Kate is an amazing girl and its good that she is so strong willed.

Jen said...

You are such a great mom, Claire! I had never heard of this before. The world is full of so many things that can happen to our bodies. Wow! I would for sure look into the Valtrex option for her, I've heard that stuff works wonders on all sorts of things! Well I am glad you updated your blog too, I missed u. I felt like I had no life at all cuz I was updating SO much and I haven't heard from some folks.

anniemcq said...

Claire - this brought tears to my eyes. I so sympathize with everything you said: the worry, the fear, the frustration of trying to find doctors, the nagging thought that this small thing might turn into something huge and life threatening. Sending you hugs - Kate is such an amazing girl, so funny and feisty and strong. She gets that from you.

Emily said...

So I sent Jamie Gibson Hartley the link to your blog because I found her on Facebook. (Brent used to be her home teacher when we were at BYU.) I hope you don't mind. Here is a link to her mom's website. http://www.sheilagibson.org/scrapgee2.html It doesn't say anything about EB but it does have an mp3 of one of Jamie's songs from her Christmas album that raises money for EB research.

This may be silly, but in case you don't remember, Jamie is that woman with EB that had an article about her in the Ensign a couple of years ago. But you probably already knew that.

P.S. Go Kate! She's awesome! :)

xcdenke said...

Our prayers are with you and Kate. You are such an amazing Mom! Find strength in prayer, it's what gets us through it all.