Perseverance: YOU Be that One in a Million!: OCTOBER Rallying to Increase DYSAUTONOMIA Awareness

by Margaret Aranda, MD, Ph.D.

This is where we have been in the distant past, when no one had even typed the word "dysautonomi to" into the YouTube "search" box. I rallied to get Musicians, Comedians, and others to put in a word for the dysautonomi, to push to get that word out into the world! People needed to know about it! Going back in time from 2012 to 2009, here's a small sample of how we got the word out:

David Cannon, MD, and Margaret Aranda-Ferrante, MD
... Latvia on Eyewitness News

Interview by Christine Dadar

Uploaded on July 3, 2009

dysautonomi POTS Me validation real disease unknown frustrating frustration suicide depression wheelchair walker cane naps rest hydration low blood volume eat more salt not intended as medical advice ask your doctor lots of love = LOLV

_______________________________________________________

"Inside My Room - Tim Shepperd Song
by mrnormhgw

For Dysautonomi MD " Uploaded on Dec 30, 2009

Here's one for dysautonomiamd and those suffering from the illness. Say a prayer for them. Look it up if you never heard of it before.

Dysautonomi the (autonomic dysfunction) is a broad term that describes any disease or malfunction of the autonomic nervous system. This includes postural orthostatic tachycardia syndrome (POTS), vasovagal syncope, mitral valve prolapse dysautonomi to, pure autonomic failure, Neurocardiogenic syncope (NCS), Neurally the mediated hypotension (NMH), autonomic instability and a number of lesser-known Disorders such as cerebral salt-wasting syndrome.

Dysautonomi to is associated with multiple system atrophy (Shy-Drager syndrome), [1] Ehlers-Danlos syndrome, and Marfan syndrome for reasons that are not fully understood.

_________________________________________

" Words of Encouragement " Uploaded December 31, 2009

By F. Michael Ferrante, MD

dysautonomi MD strong determination to support the hard survival God has a plan, opening doors and closing doors to keep us on His Path and for His Purposes! Keep up the Good Work!

_______________________________________

" Dysautonomi Awareness Challenge " Uploaded February 10, 2010

by angels4dysauto

" Join me in a saturated mass awareness project for the month of February !!"

_____________________________

" Please Read " Uploaded April 24, 2010

by angels4dysauto

" Dysautonomi to awareness"

_________________________

" Dysautonomi Today I'm a Daisy.av the " Uploaded September 9, 2010

By Michelle Roger

"Dysautonomi of awareness. A little video from my blog Living with Bob (Dysautonomi A).

We may not necessarily be what we are so much more. Http://bobisdysautonomia.blogspot.com/

Music

" Bad Day for MVP / Dysautonomi the " Uploaded November 16, 2010

By Pastor Jeff Jones

" If any of you who are Afflicted with MVP / Dysautonomi to would like to leave a response in the form of a video, please do. We would like to know what a bad day with MVP is like for you.

If this affliction has gotten you down and you would like to talk with someone who understands, please call: 1-800-717-5596, I am available 24/7 and I would be more than happy to talk with you. You may also email me at @ hopeeternal ministries.org prayers or send a Personal Message through You Tube.

Thank you and God Bless and remember; God loves you and so do I.

Pastor Jeff "

_______________________________________________

" It Was not By Choice " Uploaded on July 21, 2011

By tuckerzo to, Musician (iTunes)

" This was Song Written for Dr Margaret Ferrante Who is a sufferer of Dysautonomi to. This song is Available on iTunes http: //itunes.apple.com/us/album/it-w ... and all The proceeds Have been donated to the invisable Disabilities Association if you do not wish to Buy the Song but would Like to donate to the IDE,

Please go to orders@invisibledisabilities.org. "

______________________________________

" Have a Heart " Uploaded on Jan 25, 2012

By Al Cursi, Comedian Extraordinaire

♥♥ There are common Diseases that people know about and we all support. Diseases that there are some of us do not know much about. I have met a few friends on YouTube that suffer from a particular disease that people need to be more aware of. It Affects a lot of people and it is cruel. Please help find a cure for the Dysautonomi ... ♥

_______________________________________________________________

" Dysautonomi Awareness 2012 " Uploaded September 13, 2012

By Kamiel the Viance

" Dysautonomi to is a broad term used to classify a variety of different illnesses. Dysautonomi to is a malfunction of your autonomic nervous system which controls your breathing, digestion, heart rate, blood pressure, sleep cycle, etc. So a person with dysautonomi the will experience a wide range of different SYMPTOMS like short of breath, gastrointestinal pain, fast / slow heart rate, low blood pressure, and inability to sleep. it can be acute, chronic, or debilitating and it really varies from person to person. Some people actually experience syncope (fainting), where the blood pools due to their gravity and they actually pass out. the cause is unknown. Please stop and take a moment to spread awareness.

Song: Titanium covered by Madilyn Bailey
https: //www.youtube.com/user/madilynb ...
Music

_______________________________

UPDATE AND KEEPING IN TOUCH February 19, 2013

By Dr. Margaret Aranda

Home from the hospital after feeling forced to "going back to work," I worked part-time for about two weeks in a medical clinic and saw about 12 Hasta per day. Than one morning, I woke up and could not move. I could not even pick up the phone. After calling in sick (which meant closing the clinic for the day, as I was the only doctor), I went straight to the Hospital. I was told by neurosurgeon Larry Khoo, MD, that I had suffered from the brainstem hypoperfusion, had two small brainstem mini-strokes, and was dehydrated. He also told me, at my bedside, that I would never be able to complete a fellowship training program at Stanford. It would be too hard to push patient beds, run to answer codes, and it would put at risk my Hasta. I asked him to write me a letter so stating, and despite almost 20 requests, he never wrote me a letter. But the next day I called Stanford, out of respect, and told them the situation, so that they could look for someone else to fill this prestigious position. It was very sad, indeed. Later, in feeling clinic, Dr. Khoo me a dynamic MRI showed that pulled out the anterior spine and depicted the brainstem, where he pointed to where my mini-strokes were.

I was never Examined by a neurologist during that weekend. The chart shows that one of the doctors watched me walk down the hallway without a problem, and that is not true. A man from MRI was blocking the doorway while the doctor was with me in the room, so it was impossible for me to leave the room. Instead, I buy in the gurney as it changed into a bed, and I was sent for gadallidi MRI of the head and neck. On The Following Sunday, the "real" neurologist Dr. Peter Lorber, waltzed into the room, yelling, "So your MRI is normal! There's nothing wrong with you! You do not have a brain tumor or an aneurysm or an AV malformation" I just looked at him. I asked, "Since when do we skip the Physical Exam and go from the Patient History to a Diagnosis? You have not even Examined me, and I've been waiting for a neuron assessment all weekend. No one has given me a complete my exam. "

Long story short, he gave me a physical exam and during one portion, asked me to stand up and close my eyes and touch my finger to my nose. He said that he would catch me if I fell. Well, I fell. And he did not catch me. I ended up with another Traumatic Brain Injury with diabetes insipidus, setting me back years and years of rehabilitation that I am still catching up to. And while he told me, "It's been 30 years and I've never had one patient to fall. Why did you fall?" ( 'Blame the patient' is a rule that doctors are not supposed to break) He denied letting me fall, saying it was my fault. I made this video when I got home: