A Pebble Hurts,But When It Is Moved For The Purpose Of Helping Those With Rare Diseases,It

http://Rare Disease Day US

When I first contacted Dr Besser it was after the appearance of country singer Joe Nichols and his wife on “The View” and I was just getting out of the hospital with yet another flare of my APS. I was overjoyed as I felt that finally we who suffer from APS(Antiphospholipid Antibody Syndrome) were to finally have someone who could be the spokesperson for all of us who suffer from this scourge.I was diagnosed with APS/Polymyalgia Rheumatica Giant C Cell Arteritis in 2003 after having suffered from five pulmonary embolisms and gradually finding myself where most days I could barely make it out of bed.I was rapidly losing me,and when I heard the announcement they were to be on….Words cannot begin…..

Yup! Words cannot begin  alright.Yes, APS can cause miscarriages and can cause still births but it is NOT just a disease for pregnant women.Nichols and his wife made it sound like that was the sum total of the entire thing.NOT! It also happens to affect men too.It can cause anything from symtoms such as migraines,constant fatigue,horrible pain everywhere,to the ones that can kill you.Pulmonary Embolisms,Seizure Disorders,Strokes,in my case impending and rapidly descending blindness.It has now known that APS has genetic components that show while twins may both carry the gene only one may have the disease and be in a wheelchair.It is also now being said that there is a direct link to MS.I do not think any of us who have it are surprised by that at all.

Back to my tale of woe,fury,and the ultimate gaining the trust of Dr Richard Besser,Chief Medical Correspondent for ABC and GMA. I had contacted him after their lying,no good appearance and I went to their page and explained what else APS can do and that men are also affected and how thrilled I was for the birth of their daughter.Great,Right? NOT! My story,the story of so many who also suffered from miscarriages,but the stories from so many who were literally dying from this disease,and what did I get? All of my comments deleted and a message to leave them alone.

It was NEVER my intent to anger them. Why would I when I was so thrilled they may be answer to the prayers of hundreds of thousands who suffer from this?

I will finish my story within a story,but right now I just hurt too damn bad,and have to shut down.

Dr Besser,You know how I feel about you,and how I think you are truely one of the good guys . Your parents must be so very proud of both you and your brother…I can butter up with the best of them,but he knows I am speaking the truth.He was willing to admit he did not know much about APS….He does now! The pebble I placed in his shoe may have moved slightly,but still has a ways to go. I do thank you from the bottom of my heart as well as the thousands who suffer in this country from this and around the world.

My hands will not longer work,and trying to figure out how to get out of bed and into the damnable chair.


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