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Autonomic Dysfunction ( Rare Disease Day )

I know this is a spine site, but I feel an obligation to reach out to the community as the branches go a very long way. I came across a tragic story of a girl with POTS ( postural orthostatic tachycardia syndrome ) recently thorugh another forum I am part of dealing with autonomic dysfunction which POTS is.  It is graphic , but I wanted to share because they just had a walk dedicated to her in Boston and her family hopes her memory changes things. As you know I have a form of autonomic dysfunction from a spinal cord injury, its said this is very common in paralyzed people or SCI patients due to damage to nervous system, this is dear to my heart and since it can be cause from spinal injury I wanted to post her story.  If you could read a small piece about it , one day you may have someone in your family with it and can help recognize it.  It averages 6 years to find the proper diagnosis even though its more common than ALS and MS, in that time many suffer and break and there are really no reasources, walks or big charities to raise awareness. It is grassroots now.  She suffered without diagnosis since 15 , but had recently gotten the diagnosis after a long road , it broke my heart and I highlighted in bold the part that I think so many of us can relate to.  I don't put this up here to start a suicide talk, I put this up to continue her memory so it can help someone else and out of respect for her family and rare disease day today .  In case you have never heard of MIT it is the top engineering school in the US , maybe in the world, she had to be something to earn a scholoship there :

Christina E. Tournant's family joked when she was growing up that she was wise beyond her years, a precocious kid who could figure out almost anything.
"We always said she was an old soul," said Christina's mother, Tava Wilson. "She just understood things."

With that burning intelligence, Christina became valedictorian of Osceola Fundamental High School and enrolled at the Massachusetts Institute of Technology. In recent weeks, she came home from MIT to recover as she fought a nervous system disorder causing pain and circulatory problems.

On Thursday night, Christina stood high on a parking garage at Tampa International Airport. At 8:17 p.m., she sent a text message: "I love you, mom."

At 8:25 p.m. Christina, 17, was found dead after she apparently jumped from the garage. On the back of a photo of herself and her mother that Christina left behind, the teenager wrote a note expressing regret at the one puzzle she would not solve — her health.

"Sorry," she told her mom, "I couldn't keep fighting."

The death of the popular 2014 Osceola Fundamental High graduate, an MIT student majoring in biomedical engineering, has shocked two communities. At MIT, where Christina was a freshman, students gathered in vigil at her dorm Saturday night. At Christina's home in Seminole, her mother made funeral arrangements for the pretty teenager with a bright smile whose family said hated letting the world see that she was so sick.

"It was physical pain that definitely led to emotional pain," Wilson said at her home, fighting to keep her composure. "She was very stoic and didn't want to let on how horrible she was feeling . . . She was really stoic to a fault."

A spokeswoman for the Tampa airport reported a suicide by a person who jumped from a parking garage Thursday. The death is being investigated.

In Seminole, teachers, friends and family remembered a vigorous student and a talented athlete on the swim team.

Joshua Engelhardt, who was Christina's advanced placement history teacher when she was a junior at Osceola Fundamental, said she was one of the best students he ever had. "She was incredible," he said.

"If there was anything she didn't understand, then she asked more questions than anybody else in class," Engelhardt said. "She was very driven. She had a motor that I never did see stopping."

Christina's death does not provide the stereotypical narrative of a student overwhelmed by the academic rigors of a prestigious university. Her mother said Christina was earning As at MIT.

"Even though she wasn't feeling good and everyone knew it, she did persevere," Wilson said.

Wilson said her daughter suffered from postural orthostatic tachycardia syndrome, or POTS, a disorder of the autonomic nervous system. The illness, which often afflicts young women, causes a range of debilitating symptoms, from an increased heart rate to circulation problems and, in Christina's case, severe pain and digestive problems. The syndrome, whose cause is not well understood, can leave sufferers completely disabled.

Poor circulation made Christina cold in the pool, her mother said, so she switched from swimming competition to diving and, though she was a diver for just three months, she was named a "rookie of the month" in February in the Eastern College Athletic Conference after she earned a spot at the NCAA Diving Regional Competition.

Wilson said her daughter suffered from POTS for two years, but she became acutely ill in December. The mother went to MIT on Feb. 16 and stayed with her daughter nine days, then brought Christina home. MIT confirmed Christina was on medical leave.

On Thursday, mother and daughter had plans to visit a doctor and maybe get a pedicure. Christina was getting frustrated with all the attention and that so many people were asking her how she was doing, Wilson said.

Christina told her mom she would spend Thursday night at her father's house. Her parents are divorced. But instead of driving to her dad's home in Seminole, the teen made her way to the airport in Tampa.

Christina left behind photos of herself with family and friends. On the back of each, she scribbled a note.

And then, she sent that final text message to her mom from the parking garage.

"She was that kid that was just happy," Wilson said, noting that her daughter was always up for any adventure, any challenge. "She wanted to do all kinds of fun things."

Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
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Comments

  • dilaurodilauro ConnecticutPosts: 13,525
    Aaron, a very tragic story.   Just wonder how many more are out there?
    Ron DiLauro Veritas-Health Forums Manager
    I am not a medical professional. I comment on personal experiences 
  • Aaron

    If ever a person suffers it would be to lose a beautiful child, it makes a person stop in their tracks and realize how blessed they are. So horribly sad.

    Sherri

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  • itsautonomicitsautonomic LouisianaPosts: 2,561
    edited 02/29/2016 - 4:41 PM
    thousands if not more, I had all the reasources in the world, money, alot of time off to travel and a history of knowing about how to handle health issues.  And it took over 3 years from my injury to find the autonomic part in 2014 and just at the end of 2015 the doctors completed my health puzzle to start full tailored treatment to what I had.  It can be a secondary part of so many horrible diseases like MS, ALS, Lyme, Lupus, spinal cord injury, but my doctors still talk about it being one of the most confusing things they have ever tried to diagnose and treat.
    An alumni mechanical engineering graduate of MIT wrote a blog detailing her own diagnosis of POTS after she graduated. Noting that within two weeks she went from a working, hiking , productive member of society to bedridden for most of the next year and still is fighting.  She said she could not imagine or think possible having this while she was at MIT trying to manage it all.
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  • itsautonomicitsautonomic LouisianaPosts: 2,561
    Yea Hope I could not even imagine, the story made me think of my godchild as she is 15.  While it is nothing close she recently had gallbladder and appendix removed after an 8 month battle with throwing up and pain, I did not have any idea how to help her and all the tests came back negative as her life as a 15 year old was non-existant due to pain.  Drs. diagnosed her with an eating disorder, bulemia, etc etc and finally the right one said it has to be the gallbladder or the appendix and we can only know by removing.  Both were bad and the appendix should have ruptured.  She is back as good as new now, but I felt so helpless.  I just could not imagine her dealing with something in the magnitude of this girl in the story and me not being able to help.  The poor parents.
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  • Aaron

    I am so glad she got well what a nightmare for a child to go through and the pain involved with gallbladder. To be a parent and try to comfort them even for a short period let alone as long as she was ill. Don't you think adults are babies compared to the strength and attitude of children they are amazing?

    I have been reading up on auto-immune diseases I had no idea there were so many and so many symptom's I have not got to how they are diagnosed yet. My brother-in-law has one I cannot think of the name he got ill over night thought it was a case of the flue. He was unable to walk, eat, breathing was difficult it hit him hard and he spent months in the hospital recovering but then had to learn to walk etc. He is still struggling with pain all over and major other issues. Anyway he is not the same person anymore it has been hard on his family. Anyway just learning and also I read from the information you gave me President Kennedy had it too. 

    I am so sorry you deal with that.

    Take care Sherri

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  • itsautonomicitsautonomic LouisianaPosts: 2,561
    What did you think about the JFK stuff hope? I found it intriguing 
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  • SavageSavage United StatesPosts: 7,385
    What a sad situation for Christina and her family..and the continuing ripple effect on so many others. 
    I hope the medical community soon learns how to sooner identify and treat.
    I appreciate to know of this situation and as you mentioned, maybe thousands more suffering same.

    Thank you for sharing all that information, Aaron.



    Sue
    Honorary Spine-Health Moderator
    -------------------------------------------------------------------------------------------------------------------------
    Please read my medical history at: Medical History

  • Aaron

    Oh wow intriguing, bazar, sad as he--, fascinating, educational to say the least that was a whole other world in some of the treatments. Also the medication he took and her attitude about keeping him as pain free as possible.

    I cannot believe you did not get my response to that information about him etc. I did wonder why no response so that is why it disappeared. Oh wow everyone should read that for so many reasons I could go on and on. It was beyond words what the president of our country suffered through, for me I printed it off and have read it several times the pain and procedures etc. that he went through and still was able to lead this country. Yes some of the treatments were out there but what a Doctor he had and I want to find one like that dedicated to get to the bottom of what is going on with me. I did get some of the tools like the rocker but too hard for my current issues but I am sitting in it at times when my lower back is screaming. I actually believe the energy/electrical thing I had in fact a lady do some therapy using a technique where she moved her hand over my thigh and I could feel the temperature escalate and then cool down it felt better. I know that sounds crazy but I was not watching her and my thigh felt good for a whole day. She stopped her practice and left the state. Did you try any of the ideas from his doctor and that other doctor gee my brain. It would be hard to follow his whole step by step suggestions but I am totally taken by his attitude towards handling Chronic Pain. I still have not read all of it but how sad that the President Kennedy had autoimmune disease right on top of everything else I am going to learn what I can because it seems to me doesn't something trigger it right and then so many other things complicate it? What floors me is how complicated it is to diagnose I never really understood that before it just does not always show up in a blood test right.

    Sorry got off track but thank you so much for pointing me that way I wonder how many people even knew what he was dealing with the health issues he was. My son said "now I understand why he rarely smiled had that pained look and was so stiff when he walked or sit".

    I could go on forever

    Thanks so so much Aaron

    Sherrie

    PS the more I read about your disease the more I get what you are dealing with I am sorry. Please if you have any other interesting reads I am getting burned out on SI joint.

  • itsautonomicitsautonomic LouisianaPosts: 2,561
    edited 03/01/2016 - 4:12 PM
    Yea , I agree.  That was a time where pain management as a practice did not exist as a specialty, and his back surgury literally they told him 50 percent chance you die. I mean it was crazy.  He was a guinea pig on alot of radical treatments, but he credits the dr with saving his life, he developed the addisons disease due to all the steroids, but as with chronic pain guess its always a trade off.  I just respected him more as a president because he seemed one of the more humanitarian ones, I can see why now with all his suffering.
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  • Hi Istautonomic as you know both my daughters have POTS and EDS and a few other illnesses thrown into the mix. It is a truly horrible situation to be in they are so ill and know that they will only get worse They are 39 and 42. The younger one being on/off bedridden since she was 14. Lately when they have ventured out in public (they only go to medical appointments) they have both been terribly abused by the general public. In the past they have been questioned by medics as to why they are using a wheelchair. One G.P when my youngest was pregnant asked her what she thought she was doing getting herself that way and who was going to look after it. The discrimination is terrible and they spend a lot of time keeping up with new medical information so that well meaning medics do not kill them off by inappropriate medical treatment. That poor girl and her family. Unfortunately I can understand only too well why she had had enough of it all.

    jill55
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