My life as a Wife, Mother, and Police Sergeant was forever changed when I was diagnosed in December of 1994 with Sarcoidosis. Fortunately, I was a patient with Henry Ford Hospital and had a great OB/GYN who shared all that she knew about Sarcoidosis with me. I was completely overwhelmed. This began my rollercoaster journey with Sarcoidosis (sar-koy-DO-sis).
In 2009, two friends, Amy Thompson-Turner and I joined together and agreed that there was an urgent need for a patient support system dedicated to individuals affected by Sarcoidosis and we founded Caring Hands Sarcoidosis Foundation. Now, more than 6 years later, we have reached and assisted thousands of Sarcoidosis patients and caregivers in improving their quality of life through advocacy, education and support group meetings. We are also excited about the medical professionals joining our efforts to raise awareness for Sarcoidosis, patient advocacy and Sarcoidosis Research.
I understand what it’s like to survive with Sarcoidosis because like many, I was completely unprepared for my diagnoses of Heerfordt's Syndrome which is a rare manifestation of Sarcoidosis. I looked on my struggles and challenges and recognized that others diagnosed with Sarcoidosis needed resources, motivation and support. I have lived 20 plus years with systemic Sarcoidosis. Systemic refers to multiple organ involvement. I have experienced years of fatigue, pain, vision loss, skin lesions, joint pain, muscle weakness, sleep disturbance, depression and breathing difficulties. Sarcoidosis has been an isolating disease for me because the majority of the symptoms are internal and many assume because “you look so good” that having a debilitating illness is not possible. This isolation has caused a strain on my family life. I have finally come to terms with not being able to continue my career, not enjoying a social life and not being able to do spur of the moment events with my family because the fatigue from Sarcoidosis is too much to bear. I have learned to live what I call “my new normal”. On the days that I wake and feel pretty good I do all that I can and on the days that I feel horrible I have learned to rest. Sarcoidosis will teach you how to live within the boundaries of “Your New Normal”.
Since our inception Caring Hands Sarcoidosis Foundation has launched events to recognize April as National Sarcoidosis Awareness Month. We also host an Annual Sarcoidosis Retreat & Workshop. We continue to listen to the needs of our community and develop resources to assist our members. We are excited about our new initiatives that are in the process of being implemented to further assist our members.
Today, because of our efforts and the dedication of our staff we have been able to accomplish a great deal. We encourage you to join us by becoming involved, whether as someone who receives our services, a volunteer or a philanthropic donor.
Welcome to Caring Hands Sarcoidosis Foundation, and thank you for your interest. Thousands depend on Caring Hands Sarcoidosis Foundation for information and education and I hope our website helps to fill your needs.
Founder & President