In 2011, Crystal Goodwin’s life turned upside down when she was diagnosed with a rare disorder called mast cell activation syndrome (MCAS). Mast cells are a type of white blood cell found in the immune system.
“When someone has a mast cell condition like Crystal’s, suddenly their mast cells just explosively release chemicals — out of the blue, sporadically and unpredictably,” said Dr. Marguerite Pennoyer, her allergist at the time.
Crystal, who lives in South Portland, suddenly developed severe intestinal problems — pain, inflammation and bleeding, and soon after, anaphylaxis, a severe, potentially life-threatening allergic reaction. Every two or three weeks it landed her in the emergency room.
Because everything she encountered was potentially an allergen that could end her life, Crystal became practically housebound and dependent on many medications. Venturing out meant needing to know the environment as well as she could, wearing a mask, always being aware of any reactions or symptoms and making sure she had her EpiPen.
A few years later, she started fainting without warning and she was diagnosed with postural orthostatic tachycardia syndrome (POTS), a fairly common form of dysautonomia that affects the blood flow throughout the body and can either make you dizzy when you stand up or cause you to faint. If two serious conditions aren’t enough, it turns out Crystal has a third one — a connective tissue disorder called hypermobile Ehlers-Danlos syndrome (hEDS).
“When I go back to my childhood, I used to have all these weird things I could do with my joints and the way I could bend my arms backward,” she said. “I was double-jointed and they would easily dislocate. My shoulders, hips, and ankles dislocate. I never knew that this is what I have.”
MCAS, POTS and EDS. A trifecta.
There hasn’t been enough research to solidify the connection but there certainly does seem to be one. In a 2015 pilot study published in the Journal of Allergy and Clinical Immunology, scientists referred to the three disorders as “a new disease cluster.” Crystal’s doctors believe her allergies brought on the POTS, which made them consider the possibility of hEDS.
It’s a lot to take in, but Crystal prefers to focus on the positive, which revolves around her husband Stanley and their baby daughter Gisele, who is about to turn 1. She didn’t think becoming a mother was even a possibility because of her medical conditions and multiple medications. Not only did she deliver a healthy baby (by cesarean section) but Crystal’s allergies also calmed down during her pregnancy and she has been in remission ever since. Her doctors say it could last a year or two.
“I’m excited that things have gotten better with the mast cell disease,” she said. ”I’m still dealing with little symptoms, but I haven’t had — I should knock on wood — a major anaphylactic event for over a year now, which is a record for me because I was going to the ER at least once a month.”
Crystal still has to take medications and she is still dealing with POTS and being rushed to the hospital at a moment’s notice, so how on earth can she also manage being a mother? She gets a lot of help and support from her husband, her mother and sister, and a good friend.
“I definitely could never do it on my own,” she said. “There’s no way. We say to each other all the time that we never could have done this without help from our family and friends.”
And now, there is another Maine family trying to help Crystal. They say they never could have managed their own struggles with MCAS had it not been for her support, and they want to give back by raising money to get her a service dog.
Loretta Morse Leighton’s daughter Martina Baker woke up one morning a few years ago covered with hives. After eight months of trying to get answers, Loretta was doing an online search of her daughter’s symptoms and discovered an article I had written about Crystal. Her story and symptoms paralleled Martina’s, so Loretta reached out to her.
“She was instrumental in getting us to Boston where Martina’s illness was finally diagnosed,” Loretta said. “I cannot tell you how many times we have called her in the middle of the night while at the ER when we need support and advice. She is amazing. She has helped so many in the MCAS world.”
Martina, who lives in Wiscasset, now has a service dog named Keeva and her anaphylactic reactions are greatly reduced because Keeva alerts her to rising histamine levels before Martina even knows she is having a problem. When this happens, Martina then takes her emergency meds.
Crystal’s dog will be trained to alert her when her heart rate starts getting high or her blood pressure is changing — and to sense that she might be fainting even before she feels anything. An alert from a trained service dog won’t prevent her from fainting but could give her control over how she falls or where she lands. The dog could also be trained to detect any allergens that might cause a severe reaction.
Before Crystal can get the dog it must be purchased and specially trained by Jamie Robinson, owner and founder of Service Dog Alliance and Assurance in Florida. Robinson not only trained Keeva but also delivered her in person and stayed with the family to help them get used to each other. After an exhaustive search and screening of potential dogs, Robinson recently found a suitable candidate for Crystal — a Goldendoodle named Demi, but it will cost $20,000 to purchase the dog and do the highly specialized training.
Crystal is looking forward to getting her dog and hopefully having more stability not only for her but for the whole family. As challenging as their lives might be, she has a lot of hope and gratitude.
“I think having my daughter has definitely helped me continue going on, especially with an increase in the dysautonomia,” she said. “I just don’t feel good, my body just hurts, everything hurts, but when I see her smiling and laughing and think of the future and what she’s going to bring to our lives, that helps me keep going.”