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Interview with Pat Guerre: on Kneading Hope Organization, Rare Disease Day in DC, Scleroderma, and CRPS

Hello everyone!

Today we have a special treat as Pat Guerre, co-founder of the Kneading Hope Organization has agreed to an interview. Pat recently returned from Washington DC where he spent Rare Disease Week. We at abodyofhope blog are so grateful that Pat Guerre is opening up about his Rare Disease Day experiences, his art, and non-profit work.

I was introduced to Pat through his incredible wife, Gina Raring-Guerre, who many reading may already know. She was a member of my support group Living with RSD, and she has gone on to become a strong voice in the CRPS, Scleroderma, and Rare disease community, along with her partner and husband, Pat. I can’t wait for you to hear their story!

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Hello Pat! Welcome! It’s a pleasure to have you joining us, and filling us in on your work and latest trip to Washington.


1. Firstly, what is Kneading Hope?

Pat: I suppose I should go back a bit. In 2013, my wife Gina, who suffers from both RSD/CRPS and Scleroderma was down to a weight only someone on their death bed should be, and her doctors confirmed exactly that. Being an artist, I began painting 12″ X 12″ hearts to fill her room and share my love with her. They prescribed her medications we couldn’t afford, and her insurance would not cover them. That’s when our fundraising art project was born called “10,000 Hearts for Gina”.

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In 2016, I submitted a work to Rare Disease Art and was awarded an Artistic Merit Award. I flew to Washington DC to be part of the reception, and it changed my life.

After my trip, I decided to participate in almost all of the events that the EveryLife Foundation had arranged for the week. I listened and learned about the rare disease community and all of their concerns. I still think about those who may or may not still be with us today. I remember parents so determined, yet afraid, trying to keep a brave face to hide their pain. It touched me completely. When we walked Capital Hill, a patient I was walking with started talking to me about patients like herself, the caregivers, and why we were all there together.

I got home from that trip changed.

I decided that after years of staying home and sharing my artwork with a few, I could do more. So with my wife Gina, and a few friends we started Kneading Hope to try and reach out. We don’t target the advocacy end of things, but the patients, caregivers, and families of people with rare diseases.

We have three main goals. Number one, awareness, and funding of other issues, through the 10,000 Hearts for Gina project, of RSD/CRPS and Scleroderma, as well as other rare diseases. Secondly, using art to raise awareness of all rare diseases through an online presence and art shows. And third, figuring out how to give caregivers some kind of respite.

We are new, we are learning, and we will continue, dedicated in this work. We also send parts of the 10,000 Hearts for Gina project out to patients, caregivers, and medical facilities and their staff to make people aware. Awareness is where it begins.

 

 

 

 

 

 

 

 

 

 

2. How did you get involved with Kneading Hope and advocacy?

I started Kneading Hope because I went to DC to show my art. There were so many people advocating and I was inspired by their dedication. I decided to go into the community based nonprofit. We didn’t start Kneading Hope as an advocacy group, we do however believe that knowing what’s happening in that realm, can only help educate, and let people know there is hope out there. 

We feel that Kneading Hope’s purpose as well as financial commitments are better served in local endeavors and supporting other groups that do the advocacy. We advocate as individuals, and that is often a difficulty financially. But, If everyone focused on advocacy and no one went out into the community, I don’t feel people would be served as they need to be, so we are looking into community-based issues such as art therapies, caregiver support issues and respite for them, as well as art as a way to focus on the diseases and the stories behind it.

3. Why did you go to Washington DC for Rare Disease Week?

As I mentioned above, it is important to be informed, so as we go out into the community, we can let people know there are folks trying to help them. The info shared, not only on the legislative side, but also the medical and research side, is often overwhelming, but also important to understand. I also find that getting together with other organizations and networking with them brings all of us closer together to share ideas and thoughts to further all of our goals.

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4. Did you meet with anyone of interest? If so, whom? 

I have to say that this is kind of a funny question to me as I grew up in Los Angeles and have met many famous people. Both in film and music, so I have been raised to just realize people are people. It takes a lot for me to consider someone a person of importance, yet this year, as well as last year, I did feel there were people of importance I met.

Last year, it was Representative Brownley of California’s 26th district. It was amazing. As we talked I learned that she had recently lost a colleague to Scleroderma. It was a very close emotional conversation and she has been a close ally to the rare disease community since being on Capital Hill. That was impactful because she understood, at least half of, what Gina and I have been through.

This year was a bit different. There were two guys there who suffer from Freidreich’s Ataxia who were involved with a bike race called The Ataxian, which we watched the documentary of. These 2 guys, Kyle Bryant and Sean Baumstark, accomplished the impossible. They, along with 2 other team mates, did the Race Across America and rode 3,000 miles in less than 9 days.

Pat pictured center with stars of “The Ataxian” documentary

Their inspiration, motivation, laughter, and caring for everyone, was the biggest interest for me. It is folks like this, that unless you are familiar with their disease, you would never know about. They, and what they are doing, is why I go to DC. There are countless others that are of interest, and inspirational, and so full of ideas, courage and hope, it makes the whole trip worthwhile.

These along with the researchers, people in academia, as well as all others, including the artists at the Rare Artists Reception, are truly the ones I am most interested in and their stories, struggles, and determination to make a change. They far outweigh any person you might think is of interest on Capital Hill.

They are what keeps me going.

 

5. What was the highlight of your DC trip?

I honestly have to say that I always walk into situations with an open mind, not knowing what to expect. I think one thing will stand out, and yet it’s always something else that gets me. This trip was no exception. There were 2 things that really grabbed me that I can say were highlights.

The first was the Conference and discussion on Genetic research and Gene therapy at the NIH (National Institute of Health). Though Gina’s diseases are considered autoimmune diseases, the topics the panels spoke on were incredible. The speed that the research is advancing in is amazing and I was happy to see that one of Gina’s diseases, RSD/CRPS, is actually being studied at the NIH. They are looking into its genetic markers. It is very upcoming research and it seems the possibilities of early detection, possible treatments, and possibly cures, are on the edge of being discovered.

The second, was after the NIH conference, walking around the mall, in the rain, and happening upon The Disabled Veterans Memorial. Though it is intended for disabled war vets, the words written on that memorial spoke volumes after such an intense week. Two of my favorite quotes I read that night were, “It’s not what you have lost that counts, it’s what you do with what’s left,” and “We start by not thinking so much anymore about what we have lost. You must think about what you have left…and what you can do with it.”

 

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Disabled Veterans Memorial Plaque

 

6. What is something you learned in Washington that will likely impact your work this year?

I remember my first conference last year in DC. We sat at a table, and a gentleman named Tony Pena, who was the Vice President of Cure AHC asked if we were new to the conference. He obviously knew we were new there, as I was like a deer in the headlights of an oncoming car. He so gently said that everyone would guide us through it and not to worry because they had been doing this for years, and they still didn’t know everything.

 

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That is what makes being there so important. Every year there are new issues. New legislation. New ideas. And most importantly, new people. Yet this year I learned more than anything- we can’t do this alone. We all need to work together, collaborate, support and hold each other up. I truly felt this year, that all of us are not a rare disease community, but rather a rare disease family. We all have our own issues, but together, speaking as one group, we are truly a force to be heard. Our needs are not individual, but are all important and need to be addressed as one voice because it is hard to ignore one disease or the other when we all speak as one.

 

7. In Your Opinion, what is the greatest challenge the rare disease community or patients with rare diseases face today?

I have to say that the challenges are great and cannot be addressed with one simple answer. There are over 7,000 rare diseases and over 30 million people in the US diagnosed with a rare disease. Some have large groups of people affected, still less than 200,000 (in each condition), and some with only 3 or 4 people per condition. This causes some major hurdles and challenges in the rare disease community.

The 1st thing that comes to mind for me, is diagnosis. With our country being so large, and so few experts in any one field of rare diseases, it is a critical need to get proper diagnosis. This is often the most difficult task as far as the medical end of things go. Doctors may not be aware of a disease and misdiagnose it. Patients that do have doctors who know and admit it is beyond their knowledge may recommend the closest experts, although those experts may have no idea of the disease. This can go on for years with diagnosis after diagnosis and never actually getting to the actual diagnosis.

Early diagnosis and proper treatment, if there is any, is critical for health and quality of life. One must remember that with over 7,000 rare diseases, only 5% have FDA approved drugs or treatment. With that being said, early treatment of the symptoms can help tremendously.

Next is the size of the patient pool of any 1 rare disease. It is not hard to see how breast cancer gets huge publicity and funding and something like Pemphigus or Alpha 1, or even GoodPasture Syndrome is not ever heard of in the main stream. There are hundreds if not thousands of diseases that no one has heard of. Awareness of diseases is of the utmost importance, in my opinion, because the more people that are aware of it, the more they can gain support, and those willing to fund research.

 

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8. If Someone reading would like to get involved in rare disease awareness or chronic illness advocacy, how can they get plugged in?

There are many great organizations that do advocacy. On the rare disease side, NORD (National Organization of Rare Diseases) is an amazing group. There is also Global Genes and The EveryLife Foundation that do great work. Many individual groups specific to a disease are often great resources as well. Many of the issues these groups advocate for can have incredible effects for many diseases, not just rare diseases.

I also would say that getting involved with a support group, whether online or in your community is also beneficial. I actually got involved because someone sent the info for the Rare Disease Artist’s contest which I had never heard of before. Through that interaction, I was exposed to so many amazing groups.

If you are so inclined, form your own group and research state or federal issues. Spread the word to those in your group/s. Ask questions and don’t be afraid to ask other groups that you may not be affiliated with. Most people are more than willing to give you info or advice. I always say that the worst info or advice is that which you are not aware of.

 

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Disabled Veteran’s Memorial

 

9. What can the average person do to help make a difference in policies effecting health?

From my own interactions with people in congress and their staff, as well as on the state level, it is actually reaching out to them. I used to think writing a letter and never getting a response meant it was forgotten, but after talking with these folks, you learn that they are dealing with hundreds of issues. You need to let them know, or remind them, as they will say, the issues are real and need to be dealt with.

I am a big proponent of the Rare Disease Legislative Caucus and would love to see every senator and congressperson in Washington become a member. Not only will it show how important the issues of the rare disease community are, it will also show how a bipartisan, bicameral committee can get together. Write a letter to your senator and congressperson and either thank them or encourage them to join the caucus. It is growing and is impressive. The link to see if your senator or congressperson is on it can be found here http://rareadvocates.org/rarecaucus/#tab-id-1.

 

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10. What is your next venture?

Since Kneading Hope is a new venture, we are looking to expand our reach and impact. For the first time, we will be showing the 10,000 Hearts for Gina project and raising funds for 2 organizations. We are also trying to start up a couple of small local programs. One will be involving art therapies, and for the other, I have started attending a caregiver support group to find out how we can offer respite to caregivers and meet caregiver’s needs. This is an important part of our work.

We also intend to work with another organization to start an online gallery, and perhaps curate art shows of work from all aspects of the rare disease community to raise awareness through stories and works, as well as raise funds through awareness and research projects.

 

11. What would you like to tell us about 10,000 Hearts for Gina?

I just want you all to know that this has been an incredible journey. I have been at it for 5 years now and could never have imagined where it has taken me. It is something I share with everyone. I really think that doing something bigger than you ever could imagine is what it is all about. Sharing the works with patients, caregivers, hospitals and doctors has been about the most emotional thing I have ever done and will continue to do through Kneading Hope.

It has been an honor to be able to share some love, light, and hope through the work. Sometimes it is painstakingly difficult as every work brings thoughts of those suffering, those lost, and those who haven’t been diagnosed, but it is all of them, and their strength, that keeps me going. It truly is their project, whether they know it or not.

 

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Would you like to leave us with anything else?

I just want to tell everyone that you matter. Your voice matters, so never be afraid to speak up. Kneading Hope is dedicated to doing what we can for as many people as we can so please reach out to us if you have any requests or ideas. We are building this organization and want your feedback. Also, if you know someone who is down and out and could use a little light, love, and hope, don’t be afraid to ask us to send them a heart. We will try and get out as many as we can under our circumstances. Sometimes it might just change someone’s outlook and let them know they are not alone in their struggles.

***

Please support Pat and Gina Raring-Guerre by following and liking their pages, and thank you for sharing to help them spread the word!

Facebook: https://www.facebook.com/KneadHope/ 

Instagram: @KneadingHope1

website: kneadinghope.org 

email: info@kneadinghope.org

Donate to Kneading Hope 

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Precious Diagnosis: What’s in a Name? #raredisease

Every time you click this link, $1 will be donated to research for a rare disease. Keep on clickin’! Thank you! Rare disease day, Feb 28th.

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Just to have a diagnosis, you’d accept even the worst titles. You dream there will some day be a label for the madness eating away at your body and your life.

You want to scream when test after test returns “normal.” You feel hopeless when time after time, appointments end without any answers- you wonder how much longer your body will hold out like this.

Each frustrated physician is at a loss, and they worry that anything more they try might only make you worse. So, one by one, they set you free into the river of uncertainty to face the un-named beasts in you alone.

Instead of one confirmed diagnosis, you have a long list of symptoms masquerading as conditions. “Chronic migraine” for example, or “vertigo.” You instinctively know that they are only symptoms of a larger, more pertinent illness, but no one can pinpoint what it is.

When I was 22, I was diagnosed correctly and immediately with a rare neurological condition.

There are no words to express my devastation; the world as I knew it had crumbled.

The early diagnosis did not help me find remission, but being diagnosed immediately afforded me some stability.

Instead of blaming my body, instead of staying up nights searching online to identify what might be wrong with me, instead of spending years looking far and wide to find the answer to the screaming question disabling me, I could turn toward the crucial journey of acceptance, coping, and seeking treatments. I sought knowledgeable doctors, read helpful research online, and reached out to support groups with the same shared name of my condition. I could blame my disease for my illness, and so could my family.

At 28, I had a very different experience. I became more ill than I have ever been… and I’ve been undiagnosable ever since. Everything has been different this time around.

Tests were normal, doctors gave up quickly and treated me like they were afraid of me. Hospitals admitted me immediately, but had no answers to give.

I began to feel like less of a person and more like a medical chart. The worse I became, the less interested doctors were in treating me. My value as a person was undermined…

I felt so alone, and it seemed that my body was trying to kill me.

For most patients with rare diseases, it can take years to recieve a proper diagnosis and treatment.

 

Seven years is the average wait.

Even if it’s a terrifying prognosis, having an answer, a community, having a standardized list of symptoms, expectations, and FDA approved treatments, is so validating when you are suffering so fiercely. Instead of blaming yourself, you can finally name the monster taking you over.

When you have a diagnosis, those who love you can advocate on your behalf. They can donate to fundraisers and participate in walks, they can pray there’s a cure for the condition torturing you. But when there is no name, people doubt you. It doesn’t matter how sick you are, if you can’t identify why you are unable to move, or sleep, or eat, or leave your bed… people wonder about your sanity. They wonder about your personal will and your strength.

They’ll say you haven’t done enough to get well. They’ll say there is more you could do, and you are just unwilling.

Ironically, the same people will later whisper that you’ve become obsessed with your illness and seeking out treatments – that it has consumed you.

If trying to regain your health has become your priority, do not listen to anyone doubting you. You are trying to save your own life. And your life is worth fighting for! You must be aggressive. Giving up is not an option.

You are not the words on a medical chart. You are not a list of symptoms, and your name is not a condition. You are not your medical history, or your pain level from 1-10. You might be in the habit of talking about matters of health, but please don’t forget about the you who has never left. You haven’t diverted from your journey. You’re the person who made you into the fighter that you are today. The unique, beautiful, lovable, sometimes goofball you. You are the only YOU this world has.

YOU are rare.

As for myself, I have come to accept that my diagnosis is rare and complex. It may in fact forever be “undiagnosable.” Managing the nameless, and finding doctors who are willing to try and do the same is my path now.

We do have labels which help us find each other, support one another, and build community. We can fight together as warriors with a united cause. We can be identified by “chronically ill,” “rare disease” and “spoonie.”

We may be undiagnosable (for now), our illnesses might not be easily identifiable, but we are not invisible.

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Article also published on The Mighty.

Rare Disease Day: Now I’m Rare poster

Now Im rare

Today is Leap Year Day, and it’s also Rare Disease Day. Since we have an extra day this year, why not raise awareness for infants, children, teens, young adults, and adult-adults with misunderstood, incurable, difficult to treat illnesses around the world? Thanks all.

Dear Body, I’m breaking up with you

There are many things you can forgive your body for, but there are moments, relationships, days in life you miss which you will never get back, unforgettable, unforgivable events you are denied in the face of disability. My body is broken, and she continues to break my heart.

This is how those of us with chronic diseases struggle so deeply to have “self love.” Trapped inside bodies that attack us, and hearts which shoulder the guilt of our loved one’s pain from the hurt our illnesses have caused- child, love thyself. Love your abuser. Forgive the one which harms those you love the most. Forgive, forgive, forgive….

Body, you have taken my choices from me all of my adult life. Body, you are the abusive relationship I have never been able to flee. Body, you have stolen my health, my career, fun, freedom… my dreams. No permission was granted to you, yet you take all you touch. You are a jealous, volatile disease, and you only care about your own needs. I have suffered abuse and trauma at the hands of doctors on your account, though, you still batter me without compassion. I’ve been abandoned and made to feel worthless, INVISIBLE because of you body; I’ve had enough of your games!

Body, I break up with you. Sorry, not sorry.

I tear you from my soul and leave you. I will still care for you, because I am obligated. I am bound to you in ways I cannot choose, but I will no longer adore you. I will not call you my own. We are committed to one another, but I turn my back to you, body. From here on out, you will be “Body” and I will go forward being Me. 

This is my self love. This is my self compassion. This is my choice.

I rage against your victimization. Your assault on my essence is over. I choose to make my life despite you, in spite of you! 

I choose, I choose, I choose.

My flesh and bone surrenders, but my spirit rises up! Your reign, your emotional and psychological torture is over. Call it dissociation, call it compartmentalizing, call it what you will- it IS a detachment, and it is necessary.

I sign the papers and I box up your things. You can live in the basement and I will now and forevermore preside upstairs, in charge of THIS HOUSE.

Sign here X  _________________

Please support Rare Disease Day on February 29th. www.rarediseaseday.us

Chronic Pain of the Brain: #ChronicMigraine, If only I Could SCREAM!!

For nearly 11 years I have had a neurological chronic pain condition which is known as mysterious, under-researched, difficult to treat, incurable, lacking in treatment options, and also like Chronic Migraine, many say my chronic pain condition is also “rare” when in fact neither actually should be.

Before I had been diagnosed with Complex Regional Pain Syndrome in 2004 (known as one of the most painful chronic disorders) I had never even heard of it. Neither had my family, friends, and many doctors and nurses have never heard of CRPS (RSD) either. However, 4 years ago when my journey with Chronic Migraine began, I learned that something as common as a headache could be even more mysterious and surprisingly harder to treat. I have been surviving a host of head difficulties: spinal headaches (Cerebro-spinal fluid imbalance), Cluster Headaches, Trigeminal Neuralgia (facial nerve pain) and Chronic Migraine which equals CONSTANT intense, debilitating head pain for the past 4 years straight.

But everyone knows what a migraine is. I could even buy pills at CVS for migraines and headaches, right? So why are there fewer medical options for my head pain than for a widely unheard of, “mysterious” and complex chronic pain condition like CRPS? It is baffling! This is debilitating chronic pain of the brain and doctors seem to have fewer resources and fewer answers to questions as well. It’s “ONLY a migraine” seems to be the overwhelming attitude of society and physicians, and it is because of a lack of awareness. I was part of that unaware group before 4 years ago…before my life and brain changed.

While chronic pain crippled me and affected my life and body in every way, most days I found some ways to function using walking aids like crutches or a wheel chair. In contrast, this pain in my head shuts down my thoughts, my eyes, memory, speech, my ears, balance, and just moving my arm or inhaling too deeply sends an electric jolt through my brain. My entire being is stunted due to my head pain. I would never ever want to minimize the horrors that chronic pain sufferers endure, but I had many more treatment options as a chronic pain sufferer compared to a headache disorder sufferer. In 11 years, I still have not reached the end of all options as a CRPS patient, but within a few months I had tried everything available for this horrible head pain.

Did you know that the NIH claims that Chronic Migraine and Cluster Headaches are 2 of the MOST DISABLING CONDITIONS in the U.S.? Thirty seven million Americans suffer from migraines; 2-3 million are chronic.

When I was diagnosed with chronic pain, there were so many tests, scans, physical therapy, both medical and alternative resources to exhaust, invasive injections, surgical options, non-invasive therapies, and tons of different kinds of medications. Even though the benefits were minimal, and most things I tried didn’t help at all, there were options available. And options feel a lot like HOPE when you are barely hanging on from the kind of pain CRPS causes. I feel as though it has taken so little time to expend the resources accessible for Migraine Disease, and even all of the headache doctors don’t seem very informed about what to do next, or how to answer what seem like simple questions. As I communicate with others with chronic migraine and other headache disorders, I have found that others feel the same about how their headache doctors treat their serious symptoms.

This is chronic pain of the brain, the part which controls everything in the body! It is WHO I AM. I am basically shut down for operation for most of the past 4 years. Be your own advocate? Try advocating for yourself when you can hardly speak, move, or open your eyes. When the room is spinning every time you move your head, a bird chirping can send you into a “suicide headache,” you dread something as simple as flushing the toilet, swallowing your water, or even blinking your eyes the pain is so unbearable.

Your senses are held prisoner by chronic pain of the brain- the part of you that registers all of the pain signals in your body, and now has become nothing but pain itself. This is not good enough. There are too many of us, and we deserve so much better than a life whispering in the dark.

If you are surviving Chronic Migraine, chronic pain, or other painful debilitating neurological conditions, you are not alone. February 29th is Rare Disease Day. Please share to help spread awareness. Thank you for visiting and for commenting.

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Migraine.com Statistics:

In the U.S., more than 37 mill. people suffer from migraines. Studies suggest 13% of U.S. adults have migraines, and 2-3 mill. migraine sufferers are chronic.

Almost 5 million in the U.S. get at least one migraine attack per month, while more than 11 mill. people are moderately to severely disabled due to migraines.

Migraines cost the U.S. more than 31 Billion per year in healthcare

Only $19 million goes into researching migraine disorders

~Find me at @aBodyofHope on Twitter

www.Facebook.com/Living.with.RSD for a positive chronic pain support group welcoming all types of chronic pain conditions

Rare Disease Day

One of my favorite writer/bloggers, Mark from The Gad About Town discusses the importance of the upcoming Rare Disease Day. He shares his experience with his own rare disease, SMA and how it effects his body.
I live with my own “rare” illnesses like POTS, CRPS and IH to name a few. Many would argue that these are not rare given the estimated number of people living with the same illnesses. In the medical world however, these conditions are so rarely known.
My friend and blogger Mark from The Gad About Town so eloquently explains what it means to have a “rare” illness, and why we share information on occasions like Rare Disease Day.

The Gad About Town

One friend has antiphospholipid antibody syndrome, which causes blood clots to form in any blood vessel in the body and leads to transient ischemic attacks (TIAs), or what she cheerfully refers to as “mini-strokes.” (Most people who have recurring TIAs call them mini-strokes; my friend has the happy quality of coming away from hers with anecdotes about the experience that make them almost sound like something I want to have, too.)

One of my closest friends has fibromyalgia, a disease of chronic pain with a “here today, gone tomorrow, here again and worse” pattern-less pattern of symptom presentation that sometimes renders her almost breathless with the pain. Everyone experiences physical pain, but a full-body stabbing pain with no traceable cause, and thus not many ways to treat it?

Other friends have multiple sclerosis, one whose symptoms are affecting his balance and control of his legs, and one whose hands are…

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