I have had the immune system disorder ME/CFS (known in the US as Chronic Fatigue Syndrome) since 2002, and both of my teen sons have had it since 2004. My older son also has Lyme disease plus two other tick infections. ME/CFS is a very debilitating illness with few effective treatments available; it requires serious lifestyle changes and activity restriction. I started writing my blog Learning to Live with CFS in 2006, and I cover topics ranging from research updates to treatments I have tried to dealing with the emotional impact of living with a chronic illness. I try to maintain a positive attitude and focus on joy and support. In addition, I started a local group in my community and surrounding states for families whose kids have ME/CFS and two online groups on Facebook, one for parents of kids who are sick and another for the teens and young adults themselves. Although my family has lived with some serious challenges these past 12 years, we are happy and try to find moments of joy in even the most difficult days.
I’m a Patient Leader