Rare Mitochondrial Disorders

Wheelin Rev · 08-30-2006, 02:26 PM

FWIW, I have MELAS, one of the many types of mitochondrial disorders, also known in the short form as just mito. Thought I'd start a thread on this family of disorders in case anybody had a question about it, anybody wants to share that they are suspect or diagnosed with mito or any other reason that you might want to post in this thread.

LOL

Dave

stumps · 08-30-2006, 03:10 PM

I am another mito. from the old BT but as you can see I have just asked for help on this forum for another condition I have just been diagnosed with as well.
Like many I do not have a label for my Mito. no syndrome as such found on testing.
Good to see you here.

Wheelin Rev · 08-30-2006, 06:12 PM

Stumps,

Nice to meet you. :wave:

I hope to be of assistance to anyone with a mito question. I am a group leader for the United Mitochondrial Disease Foundation (UMDF) at http://www.umdf.org and just thought I'd start a thread here.

I do hope you can find the answers that you are looking for.

Dave

Bobbi · 08-30-2006, 06:29 PM

Wheelin Rev,

Would it be too intrusive to ask you what MELAS is or what the acronym means?

Too, I just wanted to say, Hi!

See, we are reading your posts

.

Wheelin Rev · 08-30-2006, 06:53 PM

Quote:

Originally Posted by Bobbi

Wheelin Rev,

Would it be too intrusive to ask you what MELAS is or what the acronym means?

Too, I just wanted to say, Hi!

See, we are reading your posts

.

Bobbi,

Nope... Take a peek here:

http://www.datm.org/parsonage/journal/melas_journal.htm

I post for the whole world to know. LOL

Dave

Bobbi · 08-31-2006, 12:27 AM

Thank you, W. Rev... going to visit and read

.

KTM5665 · 08-31-2006, 06:31 AM

Hi Rev!!

I'm Alicia, mom to four kids and myself, with mito. We live in florida, and like you, am very involved with UMDF. we are affected by complex 2 and 3, with a secondary gluteric acidemia! Travel yearly( twice a year) to a specialty center for good care!

Wheelin Rev · 08-31-2006, 09:01 AM

Hi Alicia,

Nice to meet you! Were you at Atlanta this year? Are #56 and #65 yours?

A forum friend of mine trails around behind Ricky Carmichael.

Dave

KTM5665 · 08-31-2006, 09:05 AM

TeeHee!

R.C rocks, as does Travis! we spent a day with Travis this April, and my life will never be the same!!!!!

Yeppers, #56 and #65 are both me, mine and ours! Each placing in the top 5 for the series finale! Needless to say, I am uber proud. I must add though...many a prayer, and time spent with the track chaplain saw them, as well as I through!

Yes, I was in Atlanta! were you? I was actually able to attend....ALONE! I found so much to be helpful there...even found a physician here in Florida to help guide treatment!

Nice to see some other mitofolks around town!