A Mastocytosis and MCAS interview , Chronic Fatigue Syndrome / M.E., Corn Maize Allergy / Intolerance, Gastroesophageal Reflux Disease.

Jess's interview


How did all start?

Allergic type reactions in 2006. Gastrointestinal problems since birth. Allergic response to Pertussis vaccine as an infant. Allergic response to medicine as an infant. No IGE allergies but show up on skin test, and other systems.

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

Still working on mast cell disorder diagnosis. GERD diagnosis 2012. Chronic fatigue diagnosis 2016. Been trying to figure out root of various health issues since 2006, 11 years now.

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

Allergy has been the most useful treatment. GERD medications were all useless. Allergy treatments combines H1&H2.

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

Cromolyn sodium oral. H1 multiple times a day. Vitamin D3, compounded medications free of allergens. Stress reduction. Wear mask to decrease expoure to airborn toxins and pollens.

What have been your biggest difficulties?

A food will be safe one day then I will react to it the next day. Inability to eat a balanced diet due to reactions to food. Reactions to most waters and plastic.

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

At first people thought it was all in my head until they saw a reaction happen, then others spread word that it was very real. I don’t have room in my life for people who may make things more difficult for me. I have a good support system built up.

What things have you stopped doing?

I don’t even know where to start- I stop eating foods I react to and avoide any triggers that cause reactions. I have learned now that a good may be come safe again in the future and I have to try again at some point. I don’t drink coffee, I don’t eat any processed foods or fast food, I work from home but can hardly do that due to fatigue and stress.

What do you think about the future?

I have found online support groups, skilled specialists, and have done a lot of research. I am hopefully for a more functional life in the future.

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

Beginning of 2015 I moved to Texas from Illinois. This was the best I have felt in a decade. But after about 9 months I ranked harder than I ever could imagine. Doctors say it was likely the incredibly high pollen and mold counts of central Texas that almost killed me.

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

Well I was going to be a rockstar. But aside from that, being able to have a solid career, expand my business, travel the world, taste foods from other cultures.

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

My life is stifled by many challenges but I am strong and still fighting because I believe that with proper specialist care I will be able to achieve a better quality of life, possible better than I have ever known my whole life.

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

Mast cell disorders are an absolute nightmare. Go seek help immediately at the mastocytosis societ you can find them if you search in google. You need to find doctors and specialists who understand or are open to learning more about the disorders so help you. No one will know what your disorder is- not even the ER is really safe. Same for people with corn allergy. Look for the corn allergy girl online and joking the Facebook support group.


Sep 30, 2017

By: Jess

Share the interview


Couple and Mastocytosis and MCAS

Is it easy to find a partner and/or maintain relationship when you hav...

What is Mastocytosis and MCAS

What is Mastocytosis and MCAS

History of Mastocytosis and MCAS

What is the history of Mastocytosis and MCAS?

Mastocytosis and MCAS is also known as...

Mastocytosis and MCAS synonyms

Natural treatment of Mastocytosis and MCAS

Is there any natural treatment for Mastocytosis and MCAS?

Mastocytosis and MCAS symptoms

Which are the symptoms of Mastocytosis and MCAS?

Is Mastocytosis and MCAS hereditary?

Is Mastocytosis and MCAS hereditary?

Celebrities with Mastocytosis and MCAS

Celebrities with Mastocytosis and MCAS