Camryn was just 14 when she had her first Raynaud’s attack. It was a little frightening for her, but did not last more than a few hours. One year later, Camryn had a Raynaud’s attack that was very aggressive and involved her hands, feet, arms and face that lasted almost a week. Along with turning as blue as an Avatar (her words), she felt stiff, tired, and had a hard time lifting her arms. For most families, this likely would have been chalked up to a bad episode of Raynaud’s and forgotten. But Camryn’s mom Tanya, is in the medical field, and wanted more info. So, lab work was drawn, setting off a series of various tests and trips to Seattle, where Camryn was ultimately diagnosed with Systemic Scleroderma.
After the initial shock, Camryn’s family began to research this devastating disease. They’ve since learned there are Scleroderma clinics and doctors that specialize in this disease, and there is exciting news that Stem Cell Transplant is being done on Adult Scleroderma patients with almost complete reversal. Unfortunately, none of these doctors or clinics are anywhere near Boise, ID. For now, Camryn has been started on a treatment of medications including a low-dose chemotherapy agent called methotrexate. It is not certain what future treatments will be needed for Camryn, but her family is dedicated to seeking the course that is best for her.
From the family: “Camryn is the kindest soul with a contagious laugh. She is handling this as she handles every bump in the road, with quiet courage. She is our shining star. Even if a donation isn’t possible, please keep Camryn in your thoughts and prayers as we face this challenge in our family”.
About Systemic Scleroderma: An autoimmune disorder that affects the skin and internal organs. Autoimmune disorders occur when the immune system malfunctions and attacks the body’s own tissues and organs. The word “scleroderma” means hard skin in Greek, and the condition is characterized by the buildup of scar tissue (fibrosis) in the skin and other organs. The signs and symptoms of Systemic Scleroderma usually begin with episodes of Raynaud phenomenon, which can occur weeks to years before fibrosis. In Raynaud phenomenon, the fingers and toes of affected individuals turn white or blue in response to cold temperature or other stresses. This effect occurs because of problems with the small vessels that carry blood to the extremities.
Keeping Your Family in Focus