It seems that everyone has a blog these days. I hate being just one more, but I have a story and I want to share. Not only will it give me an outlet, but a voice. Hopefully it will give you knowledge, understanding and compassion in the area rare of diseases and a family's journey.
Our daughter, now a teenager, has been diagnosed with three rare disorders; Cold Induced Urticaria, Dysautonomia and Ehlers Danlos Syndrome. Among these disorders are many regular diagnoses such as migraines, neuropathy, hives, hypoglycemia, and many others.
I will share the milestones of our journey, the stumbles, the successes, the acceptance. I will also share information about the conditions themselves. I hope to bring awareness for others like her, acceptance and awareness among peers and physicians.
This is our journey as we are in rare company, looking beyond the mirror.
