Cynthia's Story

Be what you wish to see more of in others, and always be kind.

How It Began

As a child I could only tolerate drinking water and developed new allergies to different foods all the time; at age 5 I began having frequent allergic reactions to a variety of triggers, which worsened throughout my life. My symptoms range from fatigue, bloating, and nausea to breaking out into hives and severe anaphylaxis. My triggers include: heat, stress, fragrances, chemicals, pollen and dust, sun exposure, unfiltered water, loud sounds and bright lights. I am also allergic to all kinds of gluten, dairy, mustard, pecans and flax seeds, turmeric, peppermint, caffeine carbonation, squash and alcohol, peas, zucchini, cucumbers and pickles, tuna, and shellfish. Even exercising, cooking or goofing around and experiencing strong emotions can kick off symptom flares. My experience with MCAS reached a peak three years ago due to suffering from a lot of stress after relocating closer to my husband’s family, and then experiencing a death in the family. Unfortunately, family members contributed to the worsening of my symptoms by not being cautious of my triggers, meaning I was constantly exposed to them and frequently experienced attacks of anaphylaxis. 

Towards A Diagnosis

My journey towards a diagnosis of MCAS has been difficult and I’ve endured a lot of long waiting times with being seen by multiple specialists including an allergist, gastroenterologist, and two oncologists. Throughout my life I have been diagnosed with a myriad of conditions such as Chronic Inflammatory Response Syndrome (CIRS), Adrenal insufficiency, Polycystic Ovarian Syndrome, and Diabetes insipidus. Alongside these I struggle with heat and histamine intolerances, stomach ulcers and acid reflux, a heart murmur, and high blood pressure. Spending my whole life dealing with these conditions as well as their effects on my social and working life has led to me experiencing depression, anxiety, panic attacks, and Complex Post Traumatic Stress Disorder.  Doctors diagnosed me with a suspected Mast Cell Activation Disease, however when referred to an allergist, I was tested for elevated mast cell mediators but the results all came back normal. I was also referred for a bone marrow biopsy in 2018 but during the first attempt I experienced a severe reaction which led to anaphylaxis. The second attempt was successful, despite once again suffering similar reactions which this time were not as severe, this biopsy confirmed my MCAS diagnosis. 

Having spent a lot of time being seen by different medical professionals – many of which were overly negative experiences because of lack of understanding, resources, and their own fear of treating me - I was finally working with a medical team willing to ‘learn on the job’ so to say, and expand their understanding of my conditions, although they did have concerns about trying new treatments and what danger this could pose to my safety. Every day I take fifteen doses of eleven different prescription medications to treat my condition, including ketotifen and montelukast as well as Cromolyn Sodium Oral Solution mixed with water. Other treatments including a Myers Cocktail with 7.5g Vitamin; 100mg of Glutathione via IV every two weeks; IV delivery of Benadryl, Pepcid, and Zofran whenever needed.  To treat and combat anaphylaxis, I use an Epipen, Albuterol Sulfate HFA 18 GM Inhaler, Cromolyn Sodium Inhalation Solution, Promethazine tablets and injections, Diphenhydramine injection, and methyIpredinisolone injection as and when needed. Natural medicines and supplements help me to treat my symptoms too, so I take two doses of Thorne Phytisone and Histamine Shield Plus respectively per day, as well as one PatchMD either as a multivitamin or a topical patch every day, and 2 softgels of Omegas. 

I’ve always known that I experience allergic reactions more than is usual, and they seemed to get worse as I got older

Getting Support

I have to do my best to avoid my triggers or minimize my exposure to them; I can also go from being totally fine eating something one day, but then react to the same thing the next day. All of this is as exhausting as it sounds, so rest is a vital part of managing my symptoms. Because my symptoms can be triggered by general household or day to day activities like cooking or walking, I often need to rely on others to support me, especially when I require any of my emergency injections but I'm unable to administer them myself. Some days are better than others, and some days I can be bed bound or require a wheelchair to get around. 

Life can feel very isolated and challenging with my conditions, and I’ve often been made to feel like an inconvenience to others in the workplace during the times when I have been able to work. In reality, living with my symptoms and diagnoses every day is much more challenging than any job and I wish that more people understood this. Because I’m often unable to work or attend any social events, I’ve lost contact with friends and have very little in-person social interactions, but I’ve been able to find support online, where I have learned that to navigate life with this condition it really does take community. The most important thing that I have learned through my experiences is to believe in yourself even when it feels like nobody else understands what you’re going through; keep the faith because there are people who relate to your experiences. I also urge medical professionals to catch up and commit to helping us gain our quality of life back. 

Try not to take things for granted; life can change drastically, so appreciate your relationships, abilities and opportunities.