Epidermolysis Bullosa clinic visit

Epidermolysis Bullosa, or EB, is a rare genetic skin disorder the the majority of people have never heard of, yet it affects 100,000 children across the United States. Children born with this disease lack the ability to produce the collagen-7 protein that acts as a glue to bind the inner and out layers of skin together.

Because the disease affects all aspects of Garrett's body he must make frequent doctor visits. The 4-hour round trip drive to Stanford University is the easy part for Garrett and his mom. Once there the day is consumed with 8-12 hours of doctor appointments. Garrett is seen by so many different people in one day that it is hard to understand how remains patient.

Category:

News & Politics

Tags:

• Rare Disease Day
• Epidermolysis Bullosa

[kellyatjcb]

@somethingforglitz013 hi there, I have had this disease since birth, I'm now 45, been where you are and still get them, try this, only buy wool socks, very expensive and run about 12 or so a pair, only wear real leather shoes, the walking store is a very popular place, change out your socks when playing sports, as soon as you have a opportunity in marching band, stop and change socks, it's a pain I know, but I do hiking trips now and it works, I still get them but can control them

[kellyatjcb]

@Kevinkhz you learn to deal with the pain, I have it, and when I was diagnosed there were no known cases in the us, I'm 45 now! yes the pain is unbearable but this kids are strong and cherish life more than people who don't have it, to this day, I still suffer with them inside my body and out, but have proven the doctors wrong when they said I wouldn't live pass the teenage years, proven to have children when told I shouldn't and raised them, I have a happy life and can say, I made it!

[RareDiseaseContest]

Thanks for the video. We too are trying to aid researchers in their discovery of cures for these children, and we are doing this by supplying them with the research software they need. Together with the CRDN we are giving away a rare disease research system worth $50,000 to the winner of a video submission contest and the rare disease organization of their choice. To learn more about this contest visit Remedymd.com/RareDiseaseContes­t. Good luck!

[lucybug1997]

I know the feeling all to well...

[somethingforglitz013]

@xflashinglightzx Yes I do, but usually only on my feet. I just wish I could be like any other teen and run around play games and sports without having to worry about getting blisters. I really hope they find a cure, If they don't, I will:) Thank you so much for your support, it means a lot:)

[somethingforglitz013]

@xflashinglightzx Im 16, I have the least severe case its called EBS weber- cockayne subtype. It is a genetic mutation, therefore i have had it my entire life. It didnt start getting worse until about two years ago when i started doing marching band, it affects mostly my feet but sometimes my hands. The blisters on the soles of my feet are sometimes the size of a golf ball, they would pop but never heal and then another blister would form. The pain is horrible, I cant imagine Garrets life.

[somethingforglitz013]

@xflashinglightzx Im 16, I have the least severe case its called EBS weber- cockayne subtype. It is a genetic mutation, therefore i have had it my entire life. It didnt start getting worse until about two years ago when i started doing marching band, it affects mostly my feet but sometimes my hands. The blisters on the soles of my feet are sometimes the size of a golf ball, they would pop but never heal and then another blister would form. The pain is horrible, I cant imagine Garrets life.

[robpleticha]

New Online Community in 5 languages for people living with EB. Developed by EURORDIS, NORD, and International EB patient organizations.

Check it by Googling Rare Disease Communities

[somethingforglitz013]

I just got diagnosed with EB today. My heart is with you Garrett..