Watching someone you love enduring chronic illness and pain is devastating. When that person is your child, devastation yields to the intrinsic need to act. Today, I’m reaching out to ask you to take action with me by REGISTERING TO WALK or MAKE A one time or monthly DONATION to impact for the over 70 million children, teens and adults suffering from dysautonomia.
Registerfor the event by September 17th to get a DSN EVENT Day TShirt.
You may or may not know that we recently discovered our daughters, Regan and Delaney, were born with Ehlers-Danlos, a genetic connective tissue disorder that often leads to neurological and cardiac complications, especially in the teenage years. My oldest daughter had developed extreme fatigue, dizziness and frequent bouts of tachycardia which felt like panic attacks and interfered with her ability to learn, live a normal life and even attend high school. After being misdiagnosed and having her symptoms misunderstood for years, she was finally diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome), one of the common forms of dysautonomia. I joined the BOD for Dysautonomia Support Network and now our family is HOSTING THIS EVENT TO RAISE AWARENESS.