Kick In to Stop Sarcoidosis
Helen Miller
Helen Miller
Thank you for visiting my page! Read on to find out why I’m doing what I can to fight the not-so-well-known disease of Sarcoidosis.
Sarcoidosis is a rare, often chronic inflammatory disorder that causes the formation of granulomas, or clumps of inflammatory cells. Affecting each person differently, it can occur in almost any organ in the body, most commonly affecting the lungs, lymph nodes, skin and eyes. There is currently no known cure for this disease and treatment options are limited and often ineffective.
My partner Jeff was diagnosed in 2009 with stage 4 lung disease due to Sarcoidosis - there is no stage 5. As he tells of his first visit to U of M’s Sarcoidosis clinic, his physicians who had been viewing his seriously scarred lung xrays, were expecting to see someone much more debilitated coming into their clinic. They told him they would likely be speaking to him about a lung transplant sooner rather than later.
You can read Jeff’s story in his own words on his Team JB page, but what stands out for me, his partner of 20+ years, is that along with 9 years treatment of Methotrexate and Prednisone - no picnic there, anyone with Sarcoidosis or Rheumatoid Arthritis can tell you - is to counterbalance the effects of that drug regimen with determination to stay as healthy as he can through running, core fitness (alternating running days with gym workout), diet (stopped eating inflammatory nightshades - except for one big juicy heirloom tomato in the height of summer and a big helping of mashed potatos at Thanksgiving - so not total deprivation!) and lifestyle - doing more of what his creative self loves; travel, writing and recording music, running, reading, fishing, friends and family. Life is short - we only get one. This is it - we all had better live it!
I have chosen to support the Foundation for Sarcoidosis Research (FSR) by fundraising for Team KISS for Jeff and others. FSR is the leading nonprofit dedicated to finding a cure for this disease and improving care and treatment options for sarcoidosis patients. The funds all go directly to FSR and their programs for improving patient education, supporting patients and their caretakers, and of course, funding research to find better treatment options and one day, a cure.
KISS stands for Kick In to Stop Sarcoidosis, and that’s what you'll be doing by supporting my page. And supporting me on this run - which - I'm no athlete, believe me. But it's better for me if I do, as Jeff as so well shown me the whole time I've known him. And as rowing trainer once told me, "it doesn't get any easier Helen, you just get better at it!"
Please consider helping me reach my goal. Together, we can Stop Sarcoidosis!
- Helen
Sarcoidosis is a rare, often chronic inflammatory disorder that causes the formation of granulomas, or clumps of inflammatory cells. Affecting each person differently, it can occur in almost any organ in the body, most commonly affecting the lungs, lymph nodes, skin and eyes. There is currently no known cure for this disease and treatment options are limited and often ineffective.
My partner Jeff was diagnosed in 2009 with stage 4 lung disease due to Sarcoidosis - there is no stage 5. As he tells of his first visit to U of M’s Sarcoidosis clinic, his physicians who had been viewing his seriously scarred lung xrays, were expecting to see someone much more debilitated coming into their clinic. They told him they would likely be speaking to him about a lung transplant sooner rather than later.
You can read Jeff’s story in his own words on his Team JB page, but what stands out for me, his partner of 20+ years, is that along with 9 years treatment of Methotrexate and Prednisone - no picnic there, anyone with Sarcoidosis or Rheumatoid Arthritis can tell you - is to counterbalance the effects of that drug regimen with determination to stay as healthy as he can through running, core fitness (alternating running days with gym workout), diet (stopped eating inflammatory nightshades - except for one big juicy heirloom tomato in the height of summer and a big helping of mashed potatos at Thanksgiving - so not total deprivation!) and lifestyle - doing more of what his creative self loves; travel, writing and recording music, running, reading, fishing, friends and family. Life is short - we only get one. This is it - we all had better live it!
I have chosen to support the Foundation for Sarcoidosis Research (FSR) by fundraising for Team KISS for Jeff and others. FSR is the leading nonprofit dedicated to finding a cure for this disease and improving care and treatment options for sarcoidosis patients. The funds all go directly to FSR and their programs for improving patient education, supporting patients and their caretakers, and of course, funding research to find better treatment options and one day, a cure.
KISS stands for Kick In to Stop Sarcoidosis, and that’s what you'll be doing by supporting my page. And supporting me on this run - which - I'm no athlete, believe me. But it's better for me if I do, as Jeff as so well shown me the whole time I've known him. And as rowing trainer once told me, "it doesn't get any easier Helen, you just get better at it!"
Please consider helping me reach my goal. Together, we can Stop Sarcoidosis!
- Helen
Comments