Joe's interview


How did all start?

From birth I’ve always had a balance issues and hammertoes.

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

I was diagnosed about a year and a half ago and it took about six months for me to hear the true diagnosis.

For what medical specialties have you been treated? What has been the most useful specialty for your?

I started out with my primary care practitioner, then I went to geneticist, then a neurologist, then I hepatologist and my overall since this is my geneticist in conjunction with my PCP have been the best Combo for my health.

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

The most useful thing for me so far has been getting my braces also known as AFO’s.

What have been your biggest difficulties?

The biggest difficulty is I’ve seen in my life so far are my activity levels and strength have lessened even more so over the last few months.

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

I’ve been alone in this journey. My partner is disconnected and doesn’t even know what this disorders called and doesn’t want to research it he doesn’t understand the pain or the problems I have. It has put a huge strain on friendships in my marriage.

What things have you stopped doing?

I’ve been alone in this journey. My partner is disconnected and doesn’t even know what this disorders called and doesn’t want to research it he doesn’t understand the pain or the problems I have. It has put a huge strain on friendships in my marriage.

What do you think about the future?

I have not Nabel to work in the last year, I can’t go out on the beach and enjoy myself without fear of falling my ankles, I can no longer ride a bike, and my daily activities such as doing dishes vacuuming or laundry are very slow now.

So far, which years have been the best years in your life? What have you done during them?

I would have to say the best years of my life or my late teens, the things I did during that or be a kid.

What would you like to do if you didn’t have your condition?

If I didn’t have this condition I would love to be able to follow my passion and continue my career as a nurse that I can no longer do due to limitations of standing walking lifting and moving.

If you had to describe your life in a sentence, what would it be?

Sad, lonely, Painfield, and just about depressing

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

Only vice I can give to a person with this disorder is to find a good support group, educate people educate yourself, and do whatever makes you happy.


May 21, 2018

By: Joe

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