Added: 2 years ago
From: rarediseaseday
Views: 10,216
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  • @chillyandlogan - Hi there, I am so sorry that your boyfriend is suffering from this :( To answer your question: Samantha Mina is the girl in the video - she was featured on an episode of Discovery Health Channel's "Mystery Diagnosis" which you can watch by visiting my channel.

  • Watching this video is like reliving the worst times of my life I ALMOST DIED TWICE from this. I was misdiagnosed time and time again, I was told that they couldn't find anything wrong with me and all while i'm in tremendous pain losing weight quicker than a cancer patient cause I couldn't keep food or water down finally one of the Doctors at U.C Hospital diagnosed me with SMA Syndrome. I was placed on a feeding tube 1st x 6 months 2nd x 3 and I got better but I know that it can happen again .

  • My wife was diagnosed with SMA about 1.5 years ago in California, after going in and out of the ER we finally went and seen a doctor at the UCLA medical center and after numerous test they narrowed down to SMA Syndrome. She had surgery and after about 6 mo she is feeling a little bit better. There really does to need to be more awareness about this rare disease

  • I was diagnosed with SMA in 2007 after a battle of my own. Had surgery to go around the blockage after finally being diagnosed.( not keeping food down for over a week) At the ER the doc, surgeon and radiologist had only seen it in textbooks. I had to wait to see what the surgeon was going to do because he didn't know. His name is Dr Hugh Taylor in Winnipeg, MB. I thank them for saving my life. Sadly I still have problems but they have no answers now. Blockage is gone..now what..? -Gillian :(

  • heya Redviolin & Skinnybonezz.....Jay here from facebook. I couldn't help myself. Had to watch this again.

  • My husband Chuck just had surgery to correct his SMA with a arterial graft. He has been post op now for a week and is now recovering at home.

  • I suffered from severe SMA syndrome just like in this video getting down to about 60 pounds. I went from doctor to doctor all of them telling me that i was depressed or crazy...but my family and i knew better. There is hope out there. I am now fully recovered and no longer suffer. All thanks to Vanderbuilt Hospital in Tennessee. Dr. Green is the ONLY person that believed that i was not mentally ill and that there was something that could be done to help me. Feel free to contact me ,

  • @mljohnson05 what did they do to correct it?

  • This is an amazing video. One of my good friends has SMA and she is in and out of hospital all the time. I don't know what it is like to go through something like that but it must be terrible being in pain all the time!

  • I had sma when i was 14, now im 15. but when i had it, i didnt throwup once! i must have been lucky,because i have etemaphobia. I also had a PICC line for a while, but the took it out when i felt better. but i still dont feel totally well again, i cant eat large amounts of food, or spicy and deepfried food... i keep all the sma syndrom sufferers in my heart

  • Thank you for posting this clip. unfortunately i got told i have SMA 2 weeks ago. had been dealing with a lot of pain,vomiting ive been finding it very hard to eat or drink for about a year. i also found out i have familial adenomatous polyposis, & thought with the multiple surgeries & complications i had with my whole large bowel & rectum removed my problems would be gone. took alot of hospital visits, tests and 1 very alert doctor to find out i had SMA. Now i'm waiting for surgery.

  • @VIPER534 - Hello! I am so sorry to read that you have been diagnosed with SMA Syndrome. I am praying for your forthcoming surgery. I welcome you to join my "SMA Syndrome Awareness & Support" community on facebook, where you will find a wealth of information on how to deal with the condition. Feel free to contact me anytime.

    God bless!

    Samantha

  • this video is too sad i cryed! im scared

  • hey i have had sma for 4 yrs now.. im from lowell MA i was wonderin if u know any good docs.. i go to boston medical cener now but they havent done much. i have a 4 yr old lil boy.. i wish the best of luck to u an pray.. u can email me at izzyalicia07@yahoo.com. i would love to keep in touch.. i wanna know ur sympoms and stuff. caz no doc know much.. ive had a j tube an it made me gain weight but it dident help the pain.. plz comment bacc

  • @izzyalicia07

    Hi there! I just sent you a detailed message with links to all my research on SMA as well as my best treatment advice & references. Please know that you are *never* alone in this battle because God is with you and so am I... me, and my entire SMA Support Group on facebook. God bless!

  • @RedViolin87 thank u soo much for replyed to me.. i didint think ne 1 would.. i feel a lil better.. i was in the hospital for 2 days i just got home an to hear this is all do to my anziety and depression..

  • @RedViolin87 thank u soo much for replyed to me.. i didint think ne 1 would.. i feel a lil better.. i was in the hospital for 2 days i just got home an to hear this is all do to my anziety and depression.. when i have bad pain.

  • @RedViolin87 thank u soo much for replyed to me.. i didint think ne 1 would.. i feel a lil better.. i was in the hospital for 2 days i just got home an to hear this is all do to my anziety and depression.. when i have bad pain. an vomiting..

  • We are living in times where money is everything.

    Pharmaceutical companies making money on our sickness and pain,

    Doctors controlled by insurance companies.

    Cure for diseases dont come from plastic bottles, the come from a change of way of life..

    I feel your pain and rage!!!

  • This video made me cry! I have been through this same battle for 7 years and I'm only 16 years old! Doctor's are so ignorent saying its in your head or psychiatric if they can't find out what's wrong! That's where I am right now.

  • My Mom Has That. S.M.A. Please Pray :'( Its Not Easy. SO MANY MEDICAN. Can Eat Solids, Feeding Tube, Everything :'( Please Pray For Us. God Bless.<3
  • I grew up thinking doctors were all like in something like Star Trek where the doctors would do anything, even if it hasn't already been tested by 10 thousand different doctors before, in order to save a person's life or help them in a condition this bad. Big wakeup call when I found they often don't give two shits about anything, and will often do things like suddenly take all pain medication away after a surgery because they want to, no matter how much pain you're in.

  • Anyway, I just looked up SMA some more, and I don't understand something. If it's all caused by pressure on the duodenum by the SMA because of a lack of fat there, why can't a doctor do a surgery and place a stent or bridge around the duodenum so the SMA no longer compresses it? If it's caused by a physical defect rather than an immune disease, why can't they just CHANGE the physical defect?

  • When I was 90 pounds for several years and in between level 6 and 10 pain level every single day, my gastroenterologists would continue to tell me they couldn't find anything wrong with me when they did colonoscopys. I had an asshole gastro surgeon who one time did a full colonoscopy without anesthetization, and I did the whole thing fully aware.

  • I went into the hospital last year and found out i had a partial small bowel obstruction which the ER doc said was due to SMA syndrome but throughout my week at the hospital the rest of the doctors refused that that was the case and never told me what caused the obstruction put me through tons of tests and i'm still having issues is it hard to find a doctor to truly diagnose this and treat it? when they measured the distance on ct and ultrasound its only 4mm...don't know the degree angle

  • @kelbelle211 Thank you for watching my video. I am so sorry to hear of the pain you are enduring. Your story sounds very familiar. Unfortunately, when it comes to SMAS, doctors are generally ignorant or skeptical. If your arteriomesenteric distance is 4mm, then you most likely do have SMAS. If you have any questions, don't hesitate to ask. Praying for you!

  • I just found out I have this. May I ask where you recieved treatment at. Like state and hospital and Dr. name please.

  • @wiggie91771 I have been blessed by your friendship thus far. I hope the information I've passed along serves as some help to you!

  • You are an inspirational, brilliant, woman. I hope, and pray, that researchers and medical professionals will find a cure. God Bless.

  • @cdfost Thank you for being a conduit of the Lord's comfort!

  • This is beautiful....A powerful amazing Video to Help raise awareness for SMA. Thank you for taking the time to make a video. You have the soul of an angel. God Bless you my sister-in-christ. We will get through this.

    Love, Skinnybonezz =]

  • @Skinnybonezz

    And thank you for being such an amazing blessing, inspiration and encouragement to me through it all! <3

  • @Skinnybonezz

    you are in my heart as my 6 year old daughter has been diagnosed with sma syndrome.

  • @TheLacycat, My 27 year old daughter Heather was diagnosed in December of 2010 and was misdiagnosed in October and November of 2010 and we went to Loma Linda Hospital in California, The doctors were so surprised at Loma Linda when the blockage was on cat scans that were taken in April of 2010 and no doctor ever informed us of the problem. Three surgery's in 3 1/2 months she is now eating and still has problems. Contact me at: forget_me_not_19@yahoo.com if you want more information

  • @Skinnybonezz My 27 year old daughter Heather was diagnosed in December of 2010 and was misdiagnosed in October and November of 2010 and we went to Loma Linda Hospital in California, The doctors were so surprised at Loma Linda when the blockage was on cat scans that were taken in April of 2010 and no doctor ever informed us of the problem. Three surgery's in 3 1/2 months she is now eating and still has problems. Contact me at: forget_me_not_19@yahoo.com if you want more information

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