"I am lucky to have Dr. Akin, and it feels good to support him. He has always been so good to me. Any time I have a crisis he is there.”
Kim Selover of Lima, Ohio, has lived decades with systemic mastocytosis. Mastocytosis is an unpredictable, chronic disease whereby mast cells, designed to protect the body from illness and foreign elements, are abnormally produced and activated. “We probably started seeing symptoms in the ’80s,” said Kim. “My doctor would agree that something was wrong but didn’t know what. That was always hard to accept.” So she didn’t.
“When something is wrong, you assume the doctor will fix it with medicine or some other type of treatment,” she said. “But this, no one could figure out.” Kim’s son Troy, who — along with her husband, Brad, and son Blake — witnessed what they refer to as “masto-attacks” from the time he was a teenager, said, “She is really her own doctor in a way. She knows how to avoid things and how to get ahead of it.”
The first notable scare for the family was at a Michigan International Speedway one afternoon when Blake and Troy were adolescents. “We were out there all afternoon, and it was probably 96 degrees...it was hot" recalled Troy. "And as we were walking back to the car, I thought mom was trying to die on us.” A nurse nearby helped so that she could make it home. “Mom rallied, but that was the first time I thought, ‘Wow, there is really something going on here.'"
There was a subsequent event when the family went to an early-season college football game to see Blake, who was in the marching band. Kim fell ill from the heat. “I had to get out of the sun,” she said. “But I made it back for half-time to see Blake!”
In 2001, she developed a rash that was biopsied the following year, and it wasn’t until 2006 that the family was given a name for the condition. With a diagnosis of mastocytosis, Kim was able to seek a specialist. She found Cem Akin, MD, PhD, in Boston, now professor of internal medicine in the Division of Allergy and Clinical Immunology at Michigan Medicine. Dr. Akin is among the country’s leading experts on mastocytosis and its complications.
“I look fine, so there were people close to me who didn’t accept that I just don’t feel well,” Kim said. “Dr. Akin understood and validated me.”
“It is not manageable, honestly,” she said. It is often misdiagnosed. Prior to coming to Michigan Medicine, Kim had an MRI that showed lesions consistent with mastocytosis throughout her body, and a radiologist unfamiliar with the condition erroneously told the family that she had metastatic cancer. “Over the years it does do damage to your body, but the emotional toll of mastocytosis is even worse.”
Therapies are limited, but she was able to take omalizumab, a therapeutic that is typically prescribed for asthma and chronic hives, and it worked for nearly a year; however, after she had an adverse reaction, she was no longer able to take it. “An antihistamine is what will bring me around, but the side effects of too much scares me. The trial and error is taxing,” said Kim. “Because mastocytosis is an erratic disease, there is an urgent need for comprehensive, personalized therapy. Currently, the only treatment option is symptomatic therapy of allergy-like symptoms,” said Dr. Akin. “Our research has uncovered the mutations and the genetic causes of mastocytosis, and we have dedicated significant effort to examining the ability of various drugs to inhibit the mast cells to help Kim and others.”
In 2016, the family decided to host a golf outing to support Dr. Akin’s research. Troy said, “Lima is a small city, but pretty tight-knit. I thought we could get some people and put together a golf outing for this orphan disease that doesn’t have money like cancer or other diseases that are more well-known.” Each year, the family has rallied golfers, volunteers, and the community to have a good time for mastocytosis research. “It’s such an emotional day, with the golfing and kind words,” said Kim, who is unable to golf because the heat triggers her symptoms but loves to be there and help in other ways.
The funds raised from the T & D Interiors (the family business) golf outing have consistently increased each year. “I am floored that every year we have 32 teams, and groups that have never even attended and still donate,” said Troy. “It is humbling and exciting — refreshing — how kind and generous people truly are.”
“It is hard to have hope when you feel like this, but I have a lot of trust that Dr. Akin and his research team will come up with some effective treatments,” said Kim. “It means so much to be able to help him, since there’s not much funding for such a rare disorder. And the impact is even bigger because he is sharing his progress broadly.”
Dr. Akin said, “Recently, drugs have been developed that target the mutated gene involved in mastocytosis, and Michigan Medicine has more clinical trial candidates than ever before. In a current groundbreaking trial, preliminary results exhibit a significant reduction of mast cells and symptom improvement like never seen before with other therapies.”
When his calendar has aligned, Dr. Akin has attended the golf outing. “It was so nice that Dr. Akin came and the golfers could ask him questions that they may not be comfortable asking us,” said Brad. The outing usually takes place the second Friday in August. Troy said, “We try to make it fun so that people want to come back. We want to eventually have two sessions.”
“I have gotten to know Kim and her family well,” said Dr. Akin. “They share our commitment to finding the answers to this disease, and I am grateful for their efforts and the opportunity to engage with so many people who care.”
Troy said, “My hope is that additional funds will lead to more testing and evolve into better treatments that will give people like Mom the ability to manage the disease better.”
The most recent outing, in August 2021, raised $35,000 for systemic mastocytosis research at Michigan Medicine, and the family has raised a total of $142,170 in five years of hosting the event.
“I have a lot of faith, so I pray a lot. I am lucky to have Dr. Akin, and it feels good to support him,” said Kim. “He has always been so good to me. Any time I have a crisis he is there.” She went on to say, “A lot of the success of the golf outing is because those three gentlemen are loved by their business associates and friends. I hope others with mastocytosis have family as incredible as mine.”
Asked how they feel about living in Ohio, supporting a Michigan institution, Brad laughed, “We try to keep that on the down low.”