Rare Disease Day 2016...My Story

Monday, February 29, 2016 was Rare Disease Day, and in order to promote awareness, I made a video about my walk with three rare diseases: Common Variable Immunodeficiency, Myasthenia Gravis, and Ehlers-Danlos, Type IV (Vascular). At last check, my video has had over 2,225 views. I had no idea that so many would take the time to watch, but I am incredibly grateful that they did....not because I want to be in the limelight or for people to feel sorry for me. I made the video because there are 7,000 rare or orphan diseases, and most, if not all, have no cure. People are suffering, seeing doctor after doctor, with little help of improvement on the horizon. Some of these diseases are so obscure and/or complicated that doctors throw up their hands and send their patients to someone else because they don't know what to do for them. Diagnoses...and, more importantly, treatment...are delayed, and it is the patient who suffers the most. I know that this has happened to me, and if it has happened to one, I feel certain it has happened to a multitude of others. Because pinning down a diagnosis can take months...even years...many of us feel that we are crazy, and are often treated as such, while being labeled as simply desiring attention or, even worse, drug seekers, hypochondriacs or depressed.

March is autoimmune awareness month. I realize I am a little late getting started, but I am on a campaign to educate and promote awareness for the autoimmune diseases I have, so over the next couple of weeks, I'd like to take one of my autoimmune conditions and explain a little bit about it and how it has impacted my life. But today I'd like to share my Rare Disease Day 2016 video with you. (Click here to watch video). I apologize for obvious brain lapses and "ummms", but it's been a long time since I did anything like this. And hey...it's all about transparency and openness, right? I am what I am. And the fact remains that many of the diseases I have cause what many call "brain fog", an inability to complete a thought or an overall sense of...well...FOG. The kind of fog that permeates, reaching its tendrils into our brains, muddling our thoughts and making concentration difficult.

I will be updating this blog often over the next few weeks, as we have a lot of ground to cover! I will be bringing information about Celiac Disease, Dupuytren's Disease, Hashimoto's Thyroiditis, Myasthenia Gravis, Systemic Lupus, and Vestibular Neuritis...all autoimmune diseases that I have. Now I don't know why I have been afflicted with all these things, and I am not sure what God has planned as we follow this path together, but I can assure you it will be good. And I hope you will come back and walk with me as we learn more about autoimmune disease!

God bless you...

"'For I know the plans that I have for you', declares the LORD, 'plans for welfare and not for calamity to give you a future and a hope'." ~Jeremiah 29:11~