Name:  Tami Sellers

E-mail :

Adult: 32 years old

City, State:  Kunkletown, Pennsylvania

Area of body affected:  Right foot

Personal History:

I was told I had melorheostosis back in 1999.  My doctor had never seen it before so he tried everything just to help me with the pain.  I tried magnetic shoe insert...anti inflamatories....arthritis medications.....and was finally put on Lorcet which is the only thing that helps the pain.

I had x-rays and MRIs.  The bones in my foot have basically grown together and it is very painful. Some days the pain is so bad I am in tears and other days you would never know that I have it. Sometimes my left foot hurts because of they way I have to walk.  I am told there is no treatment. This is something I have to live with.

I meet a new doctor this week.  I am told she has treated people with this disease before and knows a lot about it.

I applied for disability because I can't be on my feet too long and also I am on strong pain medications. They don't understand this is something I have to live with my whole life. They awarded me a period of disability--about 7 months worth.  The state obviously doesn't know much about this disease.

I wish it could be fixed. Isn't there a surgery that can fix this disease? I am tired of being on pain medication and I am tired of the pain.

I would love to talk to anyone in the same situation.


Update added 3/26/06:


Location:  Millsboro, DE

I have been suffering with foot pain for several years. I will guess 10 yrs or more.  I have been on pain meds for too long now.  I wish there was a surgery to fix this problem.  It seems there is a surgery to fix everything else in this world, why not this?  I would love to be pain free.  I have gone too many years with this pain.  It hurts to walk, it hurts to stand, it hurts to drive, and so on.

Disability has been denied me, I think because they know nothing about it.  I told them it hurts to be on it so they said to get a sit down job.  Well, that's easier said than done when you are taking pain medications 24/7.

If anyone reads this and has had or is having surgery for the same problem, please email me.  I will even travel if I can have this problem fixed.


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