Confronting Chronic Disease and Refusing To Give Up | Susannah Meadows | TEDxNashville

when my son Shepard was three years old he started walking with a limp when he was diagnosed with juvenile idiopathic arthritis, a month later he had trouble getting out of bed, we visited the best doctors in New York City and they told us that while there was no cure for what that Shepherd had, there were medications that could treat his symptoms and if we didn't

give

Shepherd these medications, he could become disabled and of course he would still be in pain, so we started him on powerful immunosuppressants, but these medications carry concerning risks, such as lymphoma. and liver

disease

s.

They also made Shepherd feel bad and did little to relieve his arthritis pain. He would lie on the couch for several days after taking his pills. It was like he had the flu every week, but this was our only option unless he wasn't. I heard about another mother whose son recovered from arthritis six weeks after she stopped feeding him gluten and dairy foods and gave him omega-3 probiotics and other supplements when I first heard about what she dismissed as an alternative medicine? I thought it couldn't work or that the doctors would know, but when you see a little one lying on the couch it's pretty hard to accept that this is how it will be evidence or not.

The other moms' plan wasn't risky, so we decided to try it. We couldn't not try. One morning, six weeks after our experiment, I went to Shepherd's room to help him get out of bed while he had been doing it, and he jumped up and said Mommy, my knees don't hurt anymore now we have no way to Knowing what made Shepard improve, it is possible that the medication took effect late, but there are strong reasons to believe that it was the diet a couple of times that Shepard accidentally ate bread and arthritis. The pain returned immediately and when I searched the medical literature I found several studies suggesting that the diet we gave Shepard could have a positive impact on autoimmune arthritis.

Since then, researchers have told me that inflammation in the body may be related to inflammation in the gut, and that that may originate with a food intolerance or a decimated gut bacteria population, perhaps from taking antibiotics, and each Every day we learn more about how critical the population is, our microbiome, our overall health. We finally took Shepard off the medications we never expected. able to do it and yet his arthritis didn't come back now he's a happy, joking 10 year old boy he likes to draw comics he's in the running club and he doesn't remember what arthritis felt like so what may have saved him came from another mother , which got me thinking that the answer to a

disease

may be beyond the knowledge of even the best doctors and that just because something hasn't been proven to work doesn't mean it won't, no one has done it all.

The answers, which seem really obvious to me now, but I think can be difficult to recognize, in the field of medicine or in the field of medicine, doctors' experience will always be greater than ours. I came to believe that if you are facing a difficult health issue or any problem you have the option to keep going when others say you can't, as well as being a stubborn parent. I'm a journalist, so after Shepard recovered I went looking for stories of people who faced daunting medical challenges and refused to

give

up what I discovered was that my book became the other side of the impossible.

I met a woman with MS who was using a wheelchair. The medications available could no longer help her, so she decided to help herself, she read medical studies and came up with a plan that involved eating 12 cups. On a fruit and veg day in the year she returned to cycling, the mother of a child with life-threatening food allergies refused to accept that there was no treatment for her son, so she moved across the country with three children. and two dogs to pursue an experimental therapy that would address the anxiety that plagues so many children with food allergies.

A year later, that child ate everything. I knew a girl who started at the age of three months. She suffered incessant attacks. The family tried everything Western medicine can do. could offer and everything outside of that nothing worked the girl's seizures continued to get worse but her mother did not give up for a full decade of her harrowing experience they went to see another neurologist and the doctor suggested they do an MRI the scan revealed a brain tumor the tumor was removed and that girl hasn't had seizures since, so it's not about alternative medicine versus western medicine.

In fact, I think those categories are useless, it's about what works and persevering until you get there. Medicine is medicine, we cannot know if others will do it. These therapies will help us until we study them, and in fact, some of that work is already underway. Therapy for food allergies has been so successful anecdotally that Boston Children's Hospital is now researching it, but what's remarkable about the people I met is that they believe it gets better in the face of science the way or the way I was lucky enough to hear about this thing. that maybe it would work and that we tried out of desperation, they were determined to solve the unsolvable, they had an extraordinary talent for hope because, of course, you wouldn't. persist without that, I came to think of them as the untamed z', which I realized sounds like they should wear capes and maybe they should wear capes when I started my research, a couple of them hadn't had any luck yet, so that's what I wanted to write.

About them I wanted to show a variety of results because that's how it is when you experiment. I remember when I met Annie, the mother of the girl with seizures, she was still struggling and I had no hope in her and then she proved me wrong. When those seizures finally conquered, another woman I knew who had severe rheumatoid arthritis had a painful limp when I met her and then she too, over the course of two years, improved dramatically. We cannot draw conclusions from such a small sample. I wonder if perseverance itself can have an impact on whether we recover or not, if you think about just Annie and her little girl, how different her story would be now if Annie had given up even five years later.

I contacted dr. Jeffery Roediger, a psychiatrist at Harvard Medical School, asked him if he thought perseverance, that stubborn pressure for an answer, could influence our health, and he said yes, he said the mind was one of the main reasons we people were getting better and he told me about a couple of small but rigorous studies that looked at people with cancer and said that the will to survive, strength and commitment to one's own health seemed to be one of the main reasons why that some people recovered or lived longer than expected; That is the kind of mentality that the indomitable would have if they had not only sought the cure but had expected it and that is exactly the right condition to cause the placebo effect.

We know from medical studies that the placebo effect real healing is likely to occur almost any time recovery is confidently sought by researchers who have looked at the placebo effect and seen patients with Parkinson's disease, autoimmune disease, anxiety and pain who They improve when their only medicine is belief. We understand very little about how and why this happens and we really should study it more, so how is it achieved? Perseverance and its partner hope that when it is more reasonable to assume that you will not get better, because for me what is incredible is coming back from an illness that is considered totally irreversible.

Thinking you can do it, first of all, we don't have the Science can't yet say where perseverance comes from and how we can get it, but there is a study that offers some intriguing clues. Years ago at the University of Colorado, a group of rats were subjected to small blows to their tails when they were teenagers, which sounds a little like high school to me, some of the rats were able to disable the shock by manipulating a small wheel, others Rats had no means to do so, they were helpless, so the scientists followed the rats for the rest of the time. their lives, fortunately, rats don't live long and what they discovered was that the rats that had control over the shocks were and these are their words, the scientists, not the rats, the rats were inoculated for life against impotence, by what when they faced difficulties later. they didn't give up, so what the study suggests is that our early life experiences can come into play if we later hit a brick wall which was not my experience when Shepard got sick.

I took our doctors at their word that we would be dealing with this for the rest of our lives. I was hopeless and didn't seek to experiment, but now, if someone in my family got sick with an impossible disease, I would know I had to go to work. I know I'm not helpless. Don't we have some control and an enormous amount of choice in terms of what types of therapies we pursue? Then I would make a long list of doctors and I wouldn't stop there because what the indomitable taught me is that perseverance can work. I remember talking to Annie, her daughter had seizures when they were still going through a hard time and I said how can you keep going when you've had so many setbacks and she said why isn't she better yet and I asked the MS patient's son What was it that drove your mother and she said that courage is knowing that you are defeated and doing it anyway and I asked the woman who developed the allergy therapy, someone by the way who has no medical background and I said what?

You think you could solve this when the researchers who have dedicated their lives to it still haven't been able to find out what she said, she said, isn't that how I think, I think, what I want to do, thank you?