Rochelle Ray's SCwSG Story

My name is Rochelle Ray. I recently accepted the position of Director of Cryoglobulinemia Vasculitis Education and Awareness for Second Chance with Saving Grace. My story began back in 2004 when I was diagnosed with Graves Disease. This autoimmune thyroid disease was the first diagnosis of what would be many more. I learned that autoimmune disease means that my immune system somehow got misdirected and made me its target. In easy terms, I’m allergic to myself. Depending on what part of my body my immune system attacks, a new diagnosis label is given to me! My list is ever growing.

Everyone with autoimmune disease will follow a different path. Not everyone who gets one disease will go on to have more. Unfortunately, my path gained me several diagnosis’ with a few on the rare disease list. That is how I met Diane Dike.

One particular disease I have poses the highest risk and quite frankly, affects daily life the most. It is on the National Organization for Rare Disorders list. It's name: Cryoglobulinemia. It's a mouthful to say and most people even in the medical profession have never heard of it. It is a serious problem because abnormal proteins thicken or “gel” in the blood when they get cold. This blood thickening causes damage depending on what area of the body is affected at the time. Consequently, organ damage, stroke, muscle pain, neuropathy, skin rashes, fatigue, and much more can result.

Once diganosed with this frightening disease, I did my research. I found that there really was not much information out there. What I did find was Diane Dike. During an internet search I came upon her informational web site. I sent her and email and to my surprise she gave me a call. To be able to talk to someone who walked where I was walking helped me overcome the initial trauma of this diagnosis. Someone who understood everything I said or didn’t have to say. Before we hung up, we realized we had many things in common. The most disturbing revelation was that both of our mom's have Multiple Myeloma which is a blood cancer connected with our blood disease. Diane's mom just lost her battle.

We have kept in touch through facebook and almost five years after our first phone call we met in person. Our family spent the weekend in her beautiful Colorado home. During our visit she asked me to join her amazing Second Chance with Saving Grace team. SCwSG is a nonprofit organization that helps hurting people and animals. The disease is taking it's toll on Diane's strength and ability. She needs dedicated people who "get it" to carry the SCwSG torch and be a light in the darkness. It's a dream come true to be a part of this incredible team, transforming lives with help and HOPE!

It is my goal as Director of Cryogolulinemia Vasculitis Education and Awareness to not only provide information to people with medical ailments but to also provide a place that they can find the same comfort I received when I spoke to Diane. A place to unite Cryoglobulinemia patients and their family and friends so they can meet each other, share, and provide understanding. Lastly, it is my goal to increase awareness about this disease and proper information about it so the medical industry can provide better diagnose and treat in the future.

I am supported by an incredible husband and two teenage boys. We live an unusual lifestyle of travelling full time for my husband’s work. We are fortunate to see many wonderful places in the United States. My children are homeschooled by me and our traveling only enriches our education. We typically call Kansas our home because that is where we grew up and where our family lives.

I can’t wait to make a difference!