Finding Your Range podcast interview with Jeannie Di Bon

Please enjoy my interview with Jeannie Di Bon about living with mast cell activation syndrome (MCAS), Ehlers-Danlos syndrome (EDS), and dysautonomia. In this episode, I explain how I’ve been suffering from these conditions literally since birth, even though I didn’t get diagnosed until age 29. I also share my tips for living with chronic illness, joy of dog agility, and hopes for MCAS, EDS, and dysautonomia patients.

In a world that generally doesn’t understand the challenges and limitations of hypermobility, I have appreciated Jeannie Di Bon’s exercise videos for years. Jeannie herself lives with MCAS and EDS. I believe we need more practitioners and therapists, like Jeannie, who truly understand these diseases and advocate for patients. Learn more about Jeannie Di Bon.

Celebrating 5 years since my MCAS diagnosis

Five years ago, on December 22, I was diagnosed with mast cell activation syndrome.

As I entered the university’s cancer clinic, greeted by Christmas decorations and a volunteer dressed as an elf, I braced for a possible death sentence. For better or worse, my pain and exhaustion numbed my fear. I had spent the entire year unsuccessfully pleading with doctors to help me as I lost my ability to eat, move, think, and sleep. All I knew for sure was my lab work was positive and something was wrong with my mast cells.

Of course, I had never heard of a mast cell and I had to wait for an appointment. One lab test noted, “Systemic mast cell disease is a heterogeneous disorder.” So I googled “systemic mast cell disease.” After reading Mayo Clinic’s page several times, I surmised I had two diagnostic possibilities: systemic mastocytosis or mast cell leukemia. The median survival rate of mast cell leukemia after diagnosis was 6 months. I joined Facebook groups for mastocytosis, where some people briefly mentioned “a newer condition called MCAS,” but nobody could tell me if I was going to die.

Spoiler alert: I’m not dead yet.

While I felt like the most tragic soul on the planet sitting in that cancer clinic waiting room and glaring at the cheerful elf, I know now my diagnosis was arguably a Christmas miracle. I had walked a mere 5 blocks across campus and paid a $35 copay with no awareness that I was seeing a world-leading specialist. I had no idea my diagnosis would explain a lifetime of health challenges literally starting from birth (e.g. anemia, food intolerances, interstitial cystitis).

Thankfully, I also had no idea the ridiculous amounts of science and policy I would need to learn to stay alive. On the five-year anniversary of my MCAS diagnosis, I would like a damn degree.

To my fellow MCAS badasses, I want to say MCAS gets easier. To everyone else, I want you to know every day is a painful nightmare. It is really a combination of both. You collect tools and learn how to adapt.

How I describe the past five years:

Year 1: Total destruction and despair
Year 2: Renovating my life
Year 3: Building a support system
Year 4: Survival and self-advocacy
Year 5: Dreaming again

For me, 2015 was much harder than 2020. Although MCAS wasn’t a death sentence, it did feel like torture. Every day was painful and treacherous. It felt like no one was willing or able to help me. Isolating wasn’t enough. While I know how lucky I was for receiving a diagnosis, I am certain an earlier diagnosis could have prevented the worst year of my life. This is why I get so upset that affordable MCAS testing and evaluation is no longer available at the university, let alone in Minnesota. At least, there’s a lot more information and support online today.

Today, I celebrate my diagnosis and the healing it has provided through treatments and accommodations. Tomorrow, I continue fighting for access to MCAS testing and treatment.

A letter for your members of Congress

Step 1. Read this letter.

Step 2. If you live in the US, find the contact information for the three members of Congress (two U.S. senators and one U.S. representative) that represent you.

Step 3. Copy, paste, and edit this letter. Here’s a Google doc version of the letter. Send it to each of your three members of Congress via U.S. postal mail, email, or webform.

Step 4. Let me know in the comments or on social media who you sent your letters to!

Dear [member of Congress],

I am writing regarding the FDA’s request to remove all ranitidine products (including Zantac) from the market in April 2020. While ranitidine is commonly known as a medication that reduces heartburn discomfort, it is a critical daily antihistamine for people, like me, who have mast cell disease.

Many mast cell disease patients depend on ranitidine to eat, move, and sleep. Mast cell disease causes excessive release of histamine. Ranitidine is an antihistamine that blocks histamine H2 receptors, which are located throughout the body, including the brain and cardiovascular system. Without an effective H2 blocker, mast cell patients can experience severe allergic reactions including nausea, vomiting, hives, migraine, sleep disruptions, asthma, throat swelling, pulmonary edema, and life-threatening complications.

For many mast cell patients, the known benefits of taking ranitidine outweigh the potential health risks cited by the FDA. In its April 1, 2020 statement, the FDA announced, “NDMA is a probable human carcinogen (a substance that could cause cancer). In the summer of 2019, the FDA became aware of independent laboratory testing that found NDMA in ranitidine. Low levels of NDMA are commonly ingested in the diet, for example NDMA is present in foods and in water.” If ranitidine’s potential risk is less than common foods, such as bacon and cured cheese, doctors should be allowed to decide whether or not to prescribe ranitidine. There are no known cases of cancer caused by ranitidine.

The FDA seems completely unaware of the impact its actions on mast cell disease patients. While other H2 blockers such as famotidine (Pepcid) and cimetidine (Tagamet) may be effective alternatives for people without mast cell disease, this is uncommon among mast cell disease patients. As a result, mast cell patients are turning to medications, such as steroids and biologics, which have proven health risks.

The timing of FDA’s actions is alarming. The loss of ranitidine puts unnecessary strain on an already overwhelmed health care system. Furthermore, the FDA’s actions have contributed to drug shortages of famotidine. At the same time, researchers are stockpiling famotidine for COVID-19 clinical trials. Many mast cell patients are struggling to access any (prescription, compounded, or OTC) H2 blocker medication.

Please urge the FDA to reconsider its actions and allow ranitidine to immediately return the prescription market.

Sincerely,

[your first and last name]
[your street address]
[city, state zip code]