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NEWPORT NEWS -- Inda Davis Blackwell she has a genetic disorder called Dystonia. It's a neurological nerve disorder.

The 34-year old wants people to see what this disorder does to the body. She prays that the right person is watching that can help her find the right treatment.

The video attached to this story shows Blackwell experiencing a dystonic storm.

Imagine having 'Charlie Horses' all over your body for 20 minutes at a time, three to five times a day.

The nurse tries to stop her pain with morphine, but even that is too weak.

Blackwell describes it like this: 'It's like a million 'Charlie Horses' at once. Just imagine that pain
throughout your entire body. Your muscles are tightening up and they start to contort by themselves. You can't control it.'

She has a mutation of Dystonia called DYT5 which is supposed to respond to dopamine replacements, but doesn't. Ironically, just a few months ago, Inda was enjoying the endorphin rush from marathon training.

'I got to 18 miles and after that, I just couldn't do it.

She reached out to us because she is desperate to find a doctor who will take her case. Eight have already told her they couldn't help.

'They turn you away so quickly. They do it so quickly. Like two visits. And then they tell me they can't help me, and the hospital sometimes, they don't even touch me. They just look at me. The last time I went, I don't think a doctor touched me, only nurses.

When we emailed EVMS to request a specialist in the field, even they told us they had no on their faculty who was an expert in the matter. Sentara Hospital, because privacy laws, says it can't confirm if she was there.

But out of all the excruciating pain she feels, the only pain that brings her to tears is when she feels she's been a burden on her husband of just five months.

But Trey Blackwell reassures his bride.

'When you're in love with somebody, it doesn't matter the situation or circumstance or what kind of condition they have, it has nothing to do love.'

13News has contacted a specialist at Duke, Dr. Mark Stacy, and is waiting to hear if he'll take Blackwell's case.

Virginia Beach-based acupuncture therapist, Jennifer Sadler, has also agreed to take her case.

Blackwell is also looking for her estranged father who she believes has the disorder as well.



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