A Mastocytosis and MCAS interview , Polycystic Ovary Syndrome.

Dana's interview


How did all start?

I've had it my whole life to a small degree but during my 5th pregnancy it tipped into overdrive.

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

It took me 3 years of constant research to get a diagnoses.

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

Internist, gastroenterologist , OBGYN, hematologist, rheumatologist, allergy/immunologist. The allergist was the most beneficial, but I went through 3 of them before I found one willing to delve deep enough to find the answer and not write it off as "anxiety".

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

Knowing what is happening, trusting my feelings, taking the emergency meds immediately, and Xolair.

What have been your biggest difficulties?

Fear of food. Missing out on family things.

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

My family reacted only when there was an official diagnoses. I guess no one knew what to think but after it was "real" for them, they've been very supportive.

What things have you stopped doing?

Eating something without thoroughly examining the label. Having any kind of alcohol, vinegar, or leftovers.

What do you think about the future?

I'm terrified of it getting worse or going back to what it was. I'm hopeful that I can continue to find a balance and possible remission.

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

I'd say that right now hasn't been the best years of my life. We are able to love comfortably, have healthcare, travel, and move to a different state in the hopes of finding less environmental triggers.

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

Eat at fancy restaurants, not sleep 12-16 hours every day.

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

Determined to live with unconditional love for others, hope for the future, and to dance in the chaos of life.

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

Don't give up. It feels so lonely even if you are surrounded by people. Keep looking for the doctor who believes in you.


Sep 30, 2017

By: Dana

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