Rare Mitochondrial Disorders

[Wheelin Rev]

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. :rolleyes: LOL

Dave

[stumps]

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]

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 (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]

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]

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

I post for the whole world to know. LOL

Dave

[Bobbi]

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

[KTM5665]

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]

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]

:) TeeHee!:D 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!

[Wheelin Rev]

Yes, I was in Atlanta! were you?
We were not able to attend. We'll be there if the conference ever comes to the Baltimore - Washington corridor. LOL Dave

[Bobbi]

That's some site you have there, W. Rev :). Thanks for sharing the info. and offering to answer Qs :).