Meet Sandy: A Story of Hope

sandy mastocytosis

Our customer Sandy has had to make some pretty drastic lifestyle changes. She quit her full-time job and is no longer able to live alone. She doesn’t leave the house often, and is only able to socialize over the internet or the phone.

She is living with a condition called mastocytosis, which means she has an abundance of mast cells. Everyone produces these cells to fight possible foreign threats to the body, but in people with mastocytosis, these cells don’t react properly to a trigger, causing life-threatening reactions in patients.

Triggers can be almost anything and can vary from day to day. Antibiotics, bacteria, foods, heat or cold, emotional upset, exercise, pesticides, smells, spices, stress and sunlight are just a few of the things that might trigger a reaction.

Although this disease has brought about some seemingly negative changes, Sandy’s spirits cannot be dampened. Instead of feeling sorry for herself, she says she has gained a new perspective and is able to look on the bright side of the whole experience.

“I always thought of myself as a compassionate person, but I feel I have developed much more empathy and understanding of others through my own experience,” she explained. “It is important to remind myself of my accomplishments and not always look back on the things that I may see as negatives.”

Sandy is not alone in celebrating her triumphs. While socializing has become difficult as a result of her condition, she has discovered an entire online world of other “masto” patients in an online community called The Mastocytosis Society (TMS). TMS advised her to wear a medical emergency bracelet with “anaphylaxis” engraved on the first line, to immediately alert EMT’s to the urgent need for epinephrine.

“I realized if I was ever away from my family and this happened, EMT’s would need to know what my condition was and I wouldn’t be able to respond,” she said. “With mastocytosis, I am unable to be given morphine. We also have many issues with anesthesia, and other medications that can cause us to go into shock, so the medical alert bracelet is a necessity for me!”

Sandy relies on an Epi-Pen when she experiences a reaction, but because she is in an anaphylactic state and is often unconscious when she encounters a trigger, she is usually unable to administer it herself. In a medical emergency, it would be critical for first responders to know this and to be aware of other drugs that could worsen her condition. For these reasons, Sandy decided to order a medical ID bracelet. While she hasn’t been in an emergency situation since the purchase of her bracelet, she says she wears it at all times and it gives her peace of mind.

“I feel confident that these bracelets have the right info. to keep me safe!” she told us.

Sandy continues to wear her medical ID bracelet on a daily basis, along with her cheerful smile and positive attitude. Her optimistic outlook is inspiring, and something she wants to share with others.

“My advice for others with any chronic illness is to enjoy and live to the fullest each and every day!” Sandy advised. “On your good days, do the things that make you happy; do the things you love: eat ice cream, go fishing, paint, swim, shop-whatever makes your heart happy, do it with all the joy you can muster!”

Leave a Comment

Your email address will not be published. Required fields are marked *