2. Oculopharyngeal muscular dystrophy
3. Interviews

M's interview

How did all start?

OPMD runs in my father’s family. Both of his parents had the disease. My Dad inherited 2 copies of the bad gene, one from each of his parents which means my siblings and I all have one copy of the bad gene, meaning all have OPMD.

Do you already have a diagnosis? How long did it take you to get it?

I had the gene test at age 50. It was only a blood test.

What has been the most useful thing for you so far?

Going to the OPMD conference in UNM in Albuquerque. The OPMD group in yahoo and the OPMD runs in my family in Facebook.

What have been your biggest difficulties?

Swallowing, weakness in legs and droopy eyelids making difficult to see.

How has your social and family environment reacted? Have your social or family relationships changed?

No

What things have you stopped doing?

Can only eat soft foods and limit my stair climbing.

Finally, what advice would you give to a person in a similar situation?

Join a support group.