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Rare Mitochondrial Disorders

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Old 08-30-2006, 02:26 PM   #1
Wheelin Rev
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Default Rare Mitochondrial Disorders

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
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Old 08-30-2006, 03:10 PM   #2
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Default Hiya Dave,

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.
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Old 08-30-2006, 06:12 PM   #3
Wheelin Rev
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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
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Old 08-30-2006, 06:29 PM   #4
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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 .
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Old 08-30-2006, 06:53 PM   #5
Wheelin Rev
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Quote:
Originally Posted by Bobbi View Post
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
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Old 08-31-2006, 12:27 AM   #6
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Thank you, W. Rev... going to visit and read .
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Old 08-31-2006, 06:31 AM   #7
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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!
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Old 08-31-2006, 09:01 AM   #8
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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
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Old 08-31-2006, 09:05 AM   #9
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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!
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Old 08-31-2006, 08:13 PM   #10
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Quote:
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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
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