What is Porphyria
The porphyrias are inherited or acquired disorders of certain enzymes in the heme biosynthetic pathway (also called porphyrin pathway). They are broadly classified as hepatic porph...
Join Now
|
where to get testing in my area
|
Watch this |
| View More Posts Ignore |
where can i go to get tested for porphyria? i live in western mass. i'm eligible for medicare in january, so i can go to boston, nyc or dc if someone can suggest a specialist in testing.
thanks for any info i've been suffering from light sensitivity, pain attacks, sudden mood changes, blotchy skin, seizures that seem to get exacerbated by menstruation and some medications that i simply cant tolerate. trying to find some answerrs. i've been tested negative for lupus or any other autoimmune condition. Posted on 11/29/08, 09:11 pm |
| 4 Replies | Add Your Reply |
| View More Posts Ignore |
just go to your doc and see what he wants you todo 
|
|
|
|
||
| View More Posts Ignore |
yeah, i did go to my local heme for a separate issue, and wasnt impressed with our interactions, to say the least. i also understand that porphyria is a rare condition that requires expertise, specialised testing, and a nearby lab to get accurate results. hence, my question to the group.
thanks for your input, ice. i wish it was so simple as that!
|
|
|
|
||
| View More Posts Ignore |
Hi Nik
The American Porphyria Foundation can help you find a place to get the proper testing. Mt. Sinai in New York has a wonderful porphyria department with lots of research going on. I'm from Oklahoma so I'm not familiar with your area other than I have been out to Mt. Sinai to be a part of some of their research projects. Desiree at the Porphyria Foundation has LOTS of information about where to get tested and treated. They do have a very informative web-site and will do all that they can if you contact them by e-mail or by phone. Give them a call.
|
|
|
|
||
| View More Posts Ignore |
thx a lot, ewereka. i'll definitely check out that site and see if there's a contact in the ny/ma area.
|
|
|
|
||
| Add Your Reply |
