Thursday, February 2, 2012

When I started this blog a few days ago, I included some information about Dysautonomia. The information was from a website and was not written by me. I am not a physician and thought that it would be best to put information from a physician/website. Then it dawned on me last night that these were not my words, they were from someone that I did not know, was not familiar with and who might not like me sharing or posting their info without permission. That is a problem that I do not want to deal with. Personally, I feel that the people who should be teaching the physicians are the patients. Dysautonomia and it's related disorders are so poorly understood and who's to say that information from an outside source is even accurate???? So, that information has been removed. My goal for this blog is to let it become the catalyst to empower the patient AND to get the attention of medical professionals of all types. It is absolutely imperative that our VOICES be heard and therefore vital that we do the talking. Getting others to listen is going to be a challenge, but as the saying goes..'the squeaky wheel gets the grease.'  

I need to be clear here, this blog is not to be replaced with proper medical care, advice, treatment etc and should not be used as such. This blog is to inform. So, I will use my voice to tell my story and welcome yours. I will ask physicians who are experts if I can use their abstracts. I see one of the best in the US and perhaps throughout the world, Dr. Blair Grubb, MD. If you are looking for accurate and solid information just google Dr. Grubb's name and you will find pages upon pages of abstracts and studies that he has done and that have been published in reputable medical journals. Dr. Grubb has also published many books. I am truly blessed to be under the care of this remarkably kind expert. Dr. Grubb is a cardiologist who specializes in Cardiac Electro Physiology at the University of Toledo,Ohio. Dr. Grubb has been studying and researching Dysautonomia and it's related disorders for many, many years. He is not only highly regarded by his patients, but also by his peers. I have never met a kinder soul then this wonderful man. Healing truly is his calling, and his most recent book "The Calling" proves just that. 

In the days and weeks to come, I will begin to tell my story. How it has affected my life. You will also hear from my sister, Maggie, who will tell her story of what it is like being a sibling of an affected family member and how dysautonomia has changed her life and what she has learned that might help your family and friends understand.

The days of being silenced and not having a physician willing to listen must end. We must refuse the current medical hell that we have been living in and defy it by speaking up. The louder we speak, the greater the chance of being heard. We deserve proper medical care. We must insist that we get it. I do not fault all physician's for not understanding Dysautonomia, most only briefly brushed over it in medical school. So it is important to take note that we must not stop with our physician's, we have to reach the medical schools/universities and many more. We need to speak to residents and medical professionals of all types. If you say the word diabetes, breast cancer, AIDS, heart disease, cancer, medical professionals know right away what it means and the impact that it places in the world. That said, it was not that long ago when patients said the words lupus, primary immune deficiency, woman with heart disease, childhood type 2 diabetes and have a physician that understood the concept but did not know at that time the affect that these disorders would have in the US and throughout the world. With our disorders, many physicians have never even heard the word POTS, Dysautonomia, etc This makes it very challenging for us and for a well meaning physician. Then there is the flip side where we are told that we cannot be helped and are passed on to someone else, knowing that this cycle may continue.This creates a cascade of difficulties for us, affecting us physically, emotionally, mentally and often leaving us exhausted and feeling hopeless. This affects our personal lives, our professional lives, our social lives and more. Every disorder has a starting place. We must  find ours and begin educating the world so that we can end the struggle of not being properly diagnosed, getting proper treatment and end the hopeless feelings that so many of us end up with. We need to have our family, friends, co-workers, etc understand these disorders. We have a lot of work to do. I have faith that together, we can and will accomplish this. Let our voices be heard. Peace and strength to all~

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