“At the beginning, before we even knew Kennedie had PFIC 2, she was outrageously itchy and we had no explanation as to why. It was a terrible feeling having doctors ask why she was covered in scratches and scabs, and if everything was okay at home. After her diagnosis, she was on three different medications for the itch and it still didn’t stop it. We had to keep her in long sleeves and pants even in the middle of summer. People would ask why we didn’t just give her Benadryl for her itching. People don’t understand that the itch is from deep inside their bodies. We would give her cool baths to give her some relief. I was afraid she would scratch her stomach and pull out her g-tube in the process. As soon as she had her transplant the itch was gone. It was an immediate change and she has been able to wear anything, and more importantly, sleep through the night, which she hadn’t done in her entire life. Transplant can cure the itch, but should never be the only option.”
Emily Knakmuhs, mother of Kennedie
“The only way I could explain the itching is excruciating! I have taken my skin off and need a dressings because it was so bad.
My husband brought me a foot grater, the itching sends you that insane I actually used it all my body ripping into the skin.
I sat for night time end under freezing cold showers tune on my skin until I turned blue.
It made me extremely suicidal and I honestly don’t know how I got through each episode because the worst part of the disease isn’t the liver swelling, isn’t the luminous yellow skin, isn’t the vomiting, the not being able to eat and then many more symptoms you deal with its the itching!
I have always said I fight many illnesses now but the only one that can send me over the edge… is the itching. it burns it stings it feels like millions of pins of stuff in your skin at once constantly all over, it’s mentally torturing it’s just the worst thing I have ever dealt with and honestly the only thing I’m so terrified of happening again.
I have never met anyone with this disease and I really hope no one else has to deal with it, because it’s absolutely horrific.
They tried absolutely every medication/ cream possible and none worked I just cannot simply put it into short words because it’s thathorrific.”
“will we ever sleep through the night without waking up scratching, and Alaia crying, screaming “It nitches!” (her word for itches)
“She will itch with everything and anything. If I don’t let her itch she cries so badly. Nothing seems to help the itch. The itch would make her bleed but still she wouldn’t be satiated.”
“ I’m stuck on the ITCH because the ITCH is stuck on me.”