Michael Kaline - Erdheim-Chester Disease (ECD)
Meet Michael Kaline, a 45 year old man diagnosed with the rare disease known as Erdheim-Chester Disease or ECD. ECD is basically an ultra rare blood cancer that affects different body organs. Michael’s ECD is mainly in his brain and brain stem although he has involvement outside his kidneys and his heart previously. “Erdheim–Chester disease is a rare disease characterized by the abnormal multiplication of a specific type of white blood cells called histiocytes, or tissue macrophages (technically, this disease is termed a non-Langerhans-cell histiocytosis).” Michael’s disease started originally with Diabetes Insipidus (DI) in 1994. Full blown ECD didn’t start until about 2008. Only about half the ECD patients have DI also.
Michael is 45 years old and lives with his parents again. He says he was lucky enough that they took him back. “After ECD, I moved back to Florida from California. I lived on my own for about 8 months but life with ECD was too difficult to tackle on my own. I am divorced and have no children. My job was with US Customs on the Mexican border. I last worked in 2008.”
Michael was initially diagnosed in 2008, and this disease had a life-expectancy of about 3-5 years. He was scared, but not anymore. He got over his fear of death and lives every day to his best ability. He also feels more comfortable with science now that it has gotten much more advanced and better. He feels safer.
Michael has since connected with others with the same disease. He says, “There is a group that puts me in touch with knowledgable doctors and other patients. It is the Erdheim-Chester Disease Global Alliance or ECDGA. I have met some others in person At the National Institutes of Health and at annual Patient and Family Gatherings. There is also a FaceBook group.” He has also raised awareness locally. “Basically just helping to spread the word locally. I told my physical therapist about ECD awareness week last year and helped craft a post the Univ. of Miami’s neuroPT Instagram page. I try to spread the word among my doctors and their staff in order to raise awareness.”
Link to Univ. of Miami’s neuroPT Instagram page: https://www.instagram.com/p/B2T-vPegzcy/
Michael tells me about his daily life, “It depends on the day but mostly I spend a majority of my day on the computer. Usually emails, Facebook, paying bills and other easier tasks. I squeeze in workouts but I fatigue quickly after about an hour so then I have to recharge by laying in bed and listening to music or reading. I use a wheelchair so often everyday stuff takes planning. Days that I have therapy (About twice a week) usually revolve around that. I usually go about 11 AM and the rest of the day depends on my energy level after.”
Michael’s advice to patients would be never take advice from Google and always take one day at a time.
“ECD patients are no different than you. Sure there are challenges but life would be dull without them.”
Michael Kaline is such a strong man. I recently uploaded a video of him walking on the website and social media (Instagram: @theraredisorderjournal). I am just so proud of him for accomplishing this! The video can be seen under the ‘Patient Achievements’ tab of the blog.
Below are some links about ECD, if you’d like to learn more about it: