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Red Tape

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I have a friend who lost a child to Mito, and I'm not sure how to support her this Christmas season.  I don't want to hurt my friend's feelings by mentioning the child and including her in things like Christmas cards, or on the other hand I don't want to hurt my friend by not mentioning and including the child.  How do I handle this, now and for future holiday seasons when the loss is less immediate?

Lin in Mass.

I have mitochondrial disease - am I eligible for social security disability insurance, and how do I apply?

My child has mitochondrial disease but loves bikes, trikes and things that GO!

I've heard that as much as 70% of all SSDI applications are denied the first time they are submitted.  Is there anything I can do so that my application has a better chance of being approved?

Wow, I am pleased to find your Mitoaction site. This mitochondria disease started in my legs about 2003 and I was diagnosed with this disease 2008.  In six years it has gradually moved into my arms, shoulders and neck.  It is now in my heart as I was diagnosed this year with bradycardia.  I also have a brain injury and I am extremely limited on the amount of information I can process as now I get fatigued quickly and dazed like I have concussion.  Doctors are unwilling to take my case, even metabolic doctors, mainly because they know they cannot help me.  Is there reading material you could suggest on how this disease progresses?  What does it do to the heart?  How does it affect the brain cells and etc?  I am just one lost puppy so anything to help me understand this slow death.  Thank you, Syd

I am a person living with HIV/AIDS.  I took a med called Lamivudine which caused severe mitochondria depletion. I stopped the Med three years+ ago and was told the damage is reversible. My condition has not improved. I have seen countless doctors who show fear, indifference or disbelieve. Even a prestigious hospital with a Mito clinic refused to see me. All I want is a diagnosis and prognosis. It seems I am damaged goods because the Mito was caused by a med. Doctors run away screaming in horror not for me, but for their insurance. Can Anyone help?


John from Essex

"I just received a letter stating that my SSDI claim has been approved!   What happens next?"

Are there winter heat assistance programs for people/families with disabilities or medical expenses?