Angel's interview

Mastocytosis and MCAS

Alopecia Anemia Anxiety Attention Deficit Hyperactivity Disorder Bipolar Disorder Borderline personality disorder (BPD) Chronic Kidney Disease Cluster Headaches Crohn's disease Cushing Syndrome Depression Dysautonomia / POTS Ehlers Danlos Endometriosis Fibromyalgia Gastroesophageal Reflux Disease Guillain-Barre Syndrome Hashimotos Disease Histaminosis / Histamine Intolerance Hyperekplexia Hypochondroplasia Hypokalemia Interstitial Cystitis Irritable Bowel Syndrome Lipedema Lupus Mastocytosis and MCAS Migraine Multiple Chemical Sensitivity Narcissistic Abuse Victims Obsessive Compulsive Disorder (OCD) Osteopetrosis Reactive Hypoglycemia Restless Leg Syndrome Rheumatoid Arthritis Rosacea Scoliosis Sjogren Tinnitus Undifferentiated Connective Tissue Disease Urticaria pigmentosa Uterine Fibroids Wolff-Parkinson-White syndrome

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How did all start?

Sudden onset anaphalaxis, chemical sensitivity, flushing and a rash that wouldnt resolve

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

Yes, 2 yrs

What have been your biggest difficulties?

Living alone and constantly being in the ICU

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

Yes, my friends all but disappeared and my husband of 16yrs left me because I was no longer valuable once I was unable to work. Im constantly having to remind/ educate my family regarding my triggers.working

What things have you stopped doing?

Working, going outside 7 months out of the yr,wearing makeup & perfume. Im unable to eat 90% of most foods

What do you think about the future?

Im hopeful but our healthcare workers need to continue educating themselves as new or rare diseases are prevelant

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

Raising my kids, before I got sick. Luckily they were both much older and on their way to college shortly after my diagnosis

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

Lay in the sun, swim in a pool, eat Red sauce and Citrus again. Go into public places without going into Ana.

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

Tough but blessed

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

You are not alone, be prepared to advocate & fight for yourself and live for the good days

Aug 1, 2021

By: Angel

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Systemic Mastocytosis