Re: Hepatitis C & Porphyria

[Guest guest]

Welcome to the group . I was diagnosed several years ago with PCT , I also have

hep c . I didnt have just one form of the disease but was tested and found I

have 4 different types of porphyrias.Yyou were lucky you were diagnosed early I

also suffer from iron overload because of advancing liver disease . I lost my

insurance after being diagnosed so treatment for me was put on hold . I just got

insurance this month and will start my phleboties again soon . I have found

many hep c people with pct on the boards , and there is one support group . I

dont go there but I will find the url for you .

Hepatitis C & Porphyria

Hello to everyone. This is my first post so I'll tell you a bit

about my conditions. I was diagnosed with HCV in about '94 after

donating blood at work (UCLA). My enzymes were always normal & my

doctor did not believe in treatment or biopsy under those

circumstances. I went crazy for years doing research and it seemed

that every waking breath was spent either reading or talking about

HCV. After several years of research and a Hepatologist who kept

insisting that my excessive fatigue, brain fog and misc. complaints

had NOTHING to do with HCV, I closed the books and put it in the

back of my mind.

This July I spotted a watery looking blister on my finger. I

couldn't recall any piches or injuries...then there were more and

more and more. I made an appointment with my Grandmother's PCP (No

health insurance or doctor of my own). By the time I saw him 2

weeks later I had about 30 or so blisters & sores on the back of my

hands along with terrible pain and swelling. The doctor took my

health history and as soon as I told him I have HCV he presented a

diagnosis of Porphyria Cutanea Tarda...a rare metabolic disorder,

hepatic in nature. I needed expensive tests to confirm the dx so

off to Olive View I went.

Turns out that Porphyria Cutanea Tarda is quite common with HCV

infected peeps. PCT causes extreme iron overload and is treated

primarily with repeated phlebotomy. I'll have my 2nd treatment on

Monday. Once my iron load has been decreased we will discuss

treatment for HCV.

Anyone else have PCT along with HCV? There are appx. 50,000 cases

of PCT in the entire U.S. There are no " in person " support groups

and information is slim. Never have I felt so alone with a disease.

I cannot leave the house during daylight hours as sunlight is like

poison to PCT.

I'm getting depressed...and I am afraid. My girlfriend isn't much

of a talker so I really have no support. That's where you come in!

I hope to become an active member of this board and look forward to

meeting all of you. Thanks for reading my introduction.

Deb

It's a pleasure having you join in our conversations. We hope you have found

the support you need with us.

If you are using email for your posts, for easy access to our group, just

click the link-- http://groups.yahoo.com/group/Hepatitis_C_Central/

Happy Posting