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Baby has ‘worst disease you’ve never heard of’

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From NDN

LINCOLN, Calif. — A baby girl in California has a rare skin condition that makes her nearly untouchable.

Kirsti and Jason Kinkle’s daughter was born with a genetic skin disease called recessive dystrophic epidermolysis bullosa. It causes the skin to blister and even tear from rubbing or scratching.

“This is the worst disease you’ve never heard of,” her mother, Kirsti Kinkle, told KCRA.

Baby Kiira’s parents have to wrap a soft blanket around the 2-month-old just to pick her up. They spend two hours every day individually wrapping her fingers and toes before they completely cover her hands and feet to protect her from hurting herself.

“A clothing tag or rough fabric or even me picking her up under her arm can cause blisters,” she told the station. “I can’t hold her hand because it’s constantly bandaged. There is no skin-to-skin contact.”

“There is no cure,” Kinkle told the station. “Everything right now is just a treatment to improve conditions but not get rid of it.”

The Kinkles hope by sharing their story, they can raise awareness and more research can be done.

“I would never wish this on anybody, knowing she’s going to live a life of pain,” she said.

The family says they have insurance, but it does not cover the daily home treatments which can cost $10 – 20,000 a year.

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  • Vincent Dakotah Langley

    I have the same skin condition. There is no medical help for it at all. I used to get my medical care at Seattle, Washington’s VA medical center. However, they won’t even see me anymore because of my skin condition. The last time that I was up there in their Dermatology Clinic, the medical doctor working there quietly handed me a little tube of Clotrimazole — which is an over-the-counter (non-prescription), mild medication for athelete’s foot — and, he kind of whispered to me, “Go home and put some of this on, twice a day, for one week. At the end of that one week, then, you will be all healed up!” …Needless to say, I HAVE NOT been back to that VA medical center, since! This same medical doctor — a dermatologist, of course — “played with me and played with me”, so to speak, for something over six years, without actually helping me at all, until i finally simply left him, his so-called “medical care” — and I also left the VA entirely, at that same time!!! …Up there at the VA, they think that this skin condition is only some kind of a JOKE!!! And, they kept trying-and-trying, anyway, to put me in their psychiatric ward (mental hospital), just because I have this skin condition! They WOULD NEVER tell me, either, that it is actually an uncurable skin disease!!! ..DUMMIES!!!… My whole life is nothing-short-of A LIVING HELL, just because I have this HORRIBLE skin disease!!!!!!!

    • Luis Saenz (@LucidDreamLove)

      The VA in general is always a joke, from the staff on up. You gotta seek help elsewhere, even if it means paying for it man. It’s what I have done with my dental work, thankfully a few companies are now offering deals for veterans coming January though.

  • vickie

    My tears and Prayers go out to God for this innocent baby girl and her parents. May they be given the enjoyment of touch that love brings and Holy God, bring this child a miracle of health.

  • Elizabeth

    Hi. My name is Elizabeth Burris and I am 26 years old. I too have Epidemolysis Bullosa. I was wondering if there is any way that I can reach out to this family for support. While I don’t know exactly how hard it is to be a parent to a child with E.B. , I do know what it’s like to live with it. And believe it or not, as Kiira gets older, her skin will get stronger. You will be able to hold her hand, pick her up, etc without too much damage being done. She will thrive and reach countless goals. Good luck in your journey Mr. and Mrs. Kinkle.

    If they have any questions or concerns feel free to have them reach out to me via email Q13. I’m definitely open to speaking with them. Take care!

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