GoFundMe Started for NICU Nurse with MCAS

28-year-old Melissa Loewen has always enjoyed helping others. It was this spirit of community that led her to a nursing role in the BC Women’s Hospital’s NICU. But a few years ago, she was plagued with a variety of health problems: migraines, bloating, food intolerances. In 2018, she left the NICU on medical leave. Eventually, she was diagnosed with a rare disorder called mast cell activation syndrome (MCAS).

In Vancouver is Awesome, the authors describe how this condition impacts Melissa’s life. She is unable to work and struggling with the financial burden of her condition. Currently, she is looking for treatment at the Hoffman Centre. But unfortunately, the consultation, treatment, testing, and medications will cost upwards of $100,000. As a result, her friends created a GoFundMe page to raise money for Melissa’s treatments.

GoFundMe

According to the page, Melissa’s health has drastically worsened over the past few years. In addition to involuntarily vomiting after eating, she developed chronic fatigue and malnutrition. Next, she began experiencing memory loss and difficulty expressing herself through language. Now, she is assisted by her husband, Damon:

From shuffling shifts in order to accompany her to appointments, cooking, cleaning, other household chores and some days even acting as the primary caregiver of basic activities of daily living, this is not the life these newlyweds envisioned.  Three years ago, Melissa was vibrant, charismatic, athletic, and working full time in BC Women’s NICU.

As many patients with rare diseases know, the journey to diagnosis is often difficult. Many patients visit an average of 7.3 doctors before diagnosis. For Melissa, she was diagnosed with IBS, chronic fatigue syndrome (ME/CFS), Celiac disease, and fibromyalgia. However, her condition was later discovered to be MCAS:

In short, this means that the immune cells are severely overactive, causing regular and worsening allergic reactions to nearly everything and chronic inflammation throughout the entire body. With a body in continuous fight or flight mode, it is nearly impossible for it to slow down and heal.

While one “safe” food, beef, didn’t use to trigger a reaction, Melissa has been experience more allergic reactions lately.

Now, Melissa is looking for help. She is unable to eat most foods and looking at a pricey treatment. But to her and Damon, it is all worth it, even if her story simply helps raise awareness for this condition.

So far, the GoFundMe has raised $27,486 of the $100,000 goal. If you’re interested in donating, you can do so here.

Mast Cell Activation Syndrome (MCAS)

According to the American Academy of Allergy Asthma & Immunology (AAAAI), mast cell activation syndrome (MCAS) occurs when mast cells release too many mediators. Mast cells are allergy cells; when activated, they cause allergic reactions. Mediators are pro-inflammatory substances. So, when mast cells release too many mediators, or release them at the wrong times, it triggers severe allergic reactions. The AAAAI explains that:

in allergic reactions, this release occurs when the allergy antibody IgE, which is present on mast cell surfaces, binds to proteins that cause allergies. Mast cells can also be activated by medications, infections, insect or reptile venoms.

Patients with MCAS experience recurrent allergic episodes involving diarrhea and other gastrointestinal problems, breathing difficulty, swelling, hives, and low blood pressure. These episodes are not activated by the above situations, but are usually idiopathic (cause unknown). For some patients like Melissa, these episodes occur when eating food. The body mistakenly reacts to food as allergens, leaving patients unable to eat.

Symptoms of MCAS include:

  • Low blood pressure
  • Fainting
  • Severe itching
  • Hives
  • Reddened skin
  • Skin inflammation
  • Fast pulse
  • Difficulty breathing
  • Throat swelling
  • Wheezing
  • Nausea and vomiting
  • Diarrhea
  • Cramping

Read more about MCAS.

Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

Share this post

Share on facebook
Share on google
Share on twitter
Share on linkedin
Share on pinterest
Share on print
Share on email