Saturday, March 5, 2011

Information about Mitochondrial Disease

Since I'm not an expert on mitochondrial disease, I'm not the best person to explain exactly what it is.  However, I know that many of you are interested in knowing what it is and how it will affect me and my life.  I have posted multiple links to websites that are excellent at explaining mitochondrial disease.   It may require a bit of reading however.

Both of the links below are from www.MitoAction.org, a website that helps raise awareness and provides support and education for people with mito.

How Energy is Made and Mito - there is a great video on this page that explains mitochondria in a healthy person and mitochondria in someone with mitochondrial disease. It also shows what it means when people with mitochondrial disease have a defect in Complex 1 and 3 (such as myself), or any other other complexes up to 5.

Information about Mito - more medical terms - Discusses what mitochondrial disease is, symptoms, cause, prognosis, etc.

Living with Mito - great video about people living with mitochondrial disease.

There is a LOT of useful information on MitoAction's website. The above are just a few links from their website. Browse around their website and see what you can find.


The United Mitochondrial Disease Foundation is another source of information and support.
UMDF

What is Mitochondrial Disease

Types of Mitochondrial Disease - I have Complex I Deficiency and Complex III Deficiency. As you can see, there are over 40 different types, all of which present in different ways. However, the doctor told me that another 32 year-old woman with complex I and III deficiencies could have completely different symptoms than I do.

Discussion of treatments and therapies - also discusses things to avoid, including physiologic "stress" (bottom of the page).

As with MitoAction's website, UMDF's website also has a lot of useful information that I didn't link to above.  Browse around and see what you can find.

Muscular Dystrophy Association - Because mitochondrial disease is considered a metabolic disease of muscles, it is one of the diseases "covered" by MDA. I'm a Jerry's kid!!! They have a decent amount of information about mito as well.

Thanks for reading up on my disease.  I want to raise awareness as much as possible.  I especially appreciate my family and friends educating themselves about mito, so they know what I am going through and why.

5 comments:

Anonymous said...

We're mito twins....lol. I'm complex 1 & 3 also. I wonder if down the road they will find the variant we have and that it causes POTS also? There's a new webinar up on mitoaction today, The Genetics of Mitochondrial Disease. I'll watch it after the SU basetball game today. Hope you have a good weekend.

Jennifer :-) said...

Robin, I'm so glad you have an answer...even if it does SUCK! Sorry you had to go thru all those damned MRI's! :-)

Will look forward to reading up on mito...and look forward to catching up with you soon. Miss ya!

Robin said...

"Anonymous" - We ARE mito twins! I'll check out the webinar on mitoaction. I have so much to read and learn now that I know what I have.
Syracuse BB, huh? I'm a huge KU BB fan! March Madness!

Jennifer - It wasn't the MRI's that sucked, it was the MRI techs that I had to deal with. ;-)
We need to get together! I miss talking to you. Anytime you have some free time, let me know. I love visitors! Invite yourself over anytime you want.

Todd said...

Yes Mr Anonymous is me.....lol I didn't have a google account, but I do now. Crazy we're both complex 1 & 3, I wonder how many he finds with this? Is it common? So few are doing this testing there's no research on what comnplex break down is most common. Check out UMDF.org under mito types, they have a great break down on each of the complexes. Hope you're doing better now that you've been diagnosed and once SSDI starts coming in you'll have much less stress in your life.

Bibliotekaren said...

Robin, I so glad for you that you have your answer. I've been reading up on mito for over a year now. Makes one's head spin.

Mitoaction definitely has good information -- glad to hear about the webinar. The UMDF Adult section unfortunately has at least ten broken links. Hmm.

Hope things calm down some for you now. My clock is now ticking.

Best, Donna