Stiff Person Syndrome | Tara Zier | InVisible InCourage | Invisible Disabilities Association

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2 жыл бұрын

Join host Jess Stainbrook as he speaks with Dr. Tara Zier, the founder and president of The Stiff Person Syndrome Research Foundation , which she established in 2019 to raise awareness and funds for better treatments and a cure. Zier has built relationships with teams at the Stiff Person Syndrome Center at Johns Hopkins Medicine, the Mayo Clinic, and with patients around the world. In 2021, The SPSRF was selected to receive a three-year “Rare As One” grant from the Chan Zuckerberg Initiative. Zier and The SPSRF have been featured in The Washington Post, Voice of America, ABC News in Washington, and various media outlets worldwide. In 2017, Zier was forced to leave a twenty-year career in dentistry and stop the practice of karate (3rd degree black belt), due to Stiff Person Syndrome. She co-founded Smiles dental practice in Fairfax, Virginia and later joined a practice in Alexandria, Virginia. Zier is a graduate of the VCU School of Dentistry and Virginia Tech. Zier has two children, Kenna and Cameron.
Learn more at stiffperson.org/
WHAT IS STIFF PERSON SYNDROME?
Stiff Person Syndrome (SPS) is a neurological disease with autoimmune features. Symptoms include muscle spasms, hyper-rigidity, debilitating pain, and chronic anxiety. Muscle spasms can be so violent they can dislocate joints and break bones. SPS is labeled as a rare disease, with one to two in a million people affected. But these numbers are likely higher due to misdiagnosis. It takes, on average, seven years to identify SPS. It is often mistaken as Multiple Sclerosis, Parkinson’s, Fibromyalgia, Psychosomatic illness, Anxiety, Phobia, and other autoimmune diseases. Patients can be disabled, wheelchair-bound, or bed-ridden, unable to work and care for themselves. The typical patient is a middle-aged female, but men and children can suffer from SPS as well.
12/2022 We are saddened to hear Celine Dion revealed she has been diagnosed with SPS. #celinedion
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IDA's mission is to encourage, educate and connect people and organizations touched by illness, pain and disability around the globe.
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Пікірлер: 57

@KathrynJean05 Жыл бұрын

I am going through this right now...no doctor can tell me what is wrong and I have all these symptoms. I'm being told it's all in my head. I've been going through this for a year, and being dismissed, invalidated, gaslit, and I'm so scared because no one can help me. I'm in so much pain daily. I just can't get help. 😪

@deborahkemp7143 Жыл бұрын

I have other autoimmune diseases than this, but it took from my late 20's to late 40's until a Rheumatologist finally saw the symptoms in flair mode and finally diagnosed the issues. So far, I see Rheumatologist , Pulmonologist, ENT, Opthomologist, Dermatologist and others on 3 month schedule since 2016. Invisible issues for me, but all life altering and are terminal. So good to have diagnosis now, but years of suffering and told it was in my head. I gave for up doctoring for years til I had a major flair and it couldn't be ignored anymore. I get told all the time how good I look, I am terminal, I get worse everyday. The good thing is I can still get up most mornings and press on. Self care is the most important thing you can do for yourself. All good days are followed by 2-3 days of recovery. I have seen my lung disease in end stages and it will be brutal. My flares of Sjogrens will be near constant at that point. Life will be dismal. I take all I can get from everyday now, not knowing how long I have. At this point, I rarely think about endstage issues, just live day to day. Plan by the week, months are too far out. Everyday above ground is a plus. My doctors are topnotch. They have given me years, I didn't think I would have. One foot in front of the other.

@SPS_survivor Жыл бұрын

I’m having a mega hard day with crazy spasms and severe pain today guys, also panic attacks galore. I cannot stop the tears from falling. I have come back to watch Tara’s interview on this channel … somehow you give me strength. Thank you x

@InvisibleDisability Жыл бұрын

We are so happy to hear you found some encouragement! Thank you so much for sharing! 💙

@blacktailcreekhomesteader8485 2 жыл бұрын

My son has just been diagnosed with Stiff Person Syndrome. He is 22. He started having symptoms in June the summer before. So I am relieved that it has been diagnosed early, about 10 months. Better than 7 years! Looking forward to him experiencing a cure in the future.

@SPS_survivor Жыл бұрын

Hi guys, my name’s Martin from the uk 🇬🇧 I have been diagnosed with SPS for 13 years. Since I was 30 and it took at least 6 years to diagnose me through several doctors, consultants and neurologists. I felt and still do feel a great burden to my family and the couple of friends I have left and I feel guilty all the time having to ask for help with stuff I used to do with ease. When I’m in excruciating pain, having full body spasms for hours on end, it upsets me to see their pain more than my own. I wish I could do something to raise awareness over here in England such as go to the newspaper or local news as I may just be able to help one person that may not have been diagnosed and are still suffering, feeling crazy cos they don’t understand what’s happening to them. I’m worried that people may think that I’m after sympathy or pity when I just want to raise awareness and would love to make a way of raising funds for research. You all look after yourselves, those who are suffering themselves and of course those of you who are caring for friends and family with this condition 💙💔

@adamcaul Жыл бұрын

I never heard of this until I had a patient diagnosed with it. She had a very similar experience. Thank you for sharing g. It’s sad that the health care system was so negative.

@joebloggs5436 Жыл бұрын

I have just been referred for diagnosis. Am awaiting results of anti GAD abs. Have been having full tonic seizures and lower body cramps for 14 years now.

@Seers2you24 Жыл бұрын

I was also dismissed by my primary MD, When I went to the ED for numbing that was traveling up both my legs, yah hospital admitted me and after they told me "It's all in your head" nice. I am a retired nurse as result of the lack of care, my right side of my body has muscle atrophying. NOW they are listening, it only took 7 years. Took my blood test today we will see. I was also told by 3 hospitals including a county hospital that I needed operations on my knees and hips. I knew that wasn't right, I went to Cedars Sinai in LA, turns out SPS was the first disorder to rule out. We will see, thanks for making this !!!

@chacha3209 Жыл бұрын

Tara, As a Health Care professional also, I relate to you and thanks to Celine Dion for bringing this to public awareness! I'm SO HAPPY to find YOUR CHANNEL, Jess! I'm so THRILLED that Jess has these tools of symptom, etc sheets to fill out and bring to Dr appointments! I'm a Nutritional Therapist and Optimal Blood Chemistry Analyst and gave up on trying to find an MD who could help me! I've extrapolated some interesting insights that I want to bring to attention to HC professionals researching this syndrome. I hope to also start a chat and support group or join one if I can find one. I just found this site, thanks to Celine Dion for bringing it to world attention!

@InvisibleDisability Жыл бұрын

Thank you for watching! Glad you found us!

@zenaidasurwin772 Жыл бұрын

Thank you so much for shedding light on invisible neurological disabilities. I'm an RN and suffered concussion from work related violent punched in my left temple that knocked me out to the floor by a combative client and witnessed by anther RN. Since it's work related/worker's comp, the insurance , psychologist/psychiatrist was so quick to paint me as lazy (unfortunately I was voted nurse of the year in the hospital I worked ), money seeking, doctor shopping. I kept on telling my doctors that I'm in excruciating burning, tight, pressure aching pain and spinning dizziness and etc. that kept me sleepless, weak, fatigued etc. It took almost 3 years to find out by MRI that I'm suffering as well a C5C6 syringomyelia complication from the head trauma, ear nerve injury by vestibulonystagmogram with calories, moderately severe nerve damage by EMG/NCS. It's truly devastating and cruel that when the head is not cracked open that I was medically mismanaged and dismissed ( was even contemplating of worse scenario) for sometime. My advice is to keep pushing that there's something terribly wrong and does not feel right until finding the right diagnosis and treatment from a concern doctor.

@marienosoucy Жыл бұрын

Tara you are so inspiring, thank you to share your journey with us, I have a degenerative neurological disease called PLS, with high spasticity, I have tried neurofeedback which really helps and I take blacofene, I have the same kind of energy and had to admit I needed help, it’s like being obliged to become a new person, resilience is needed, we all wait for the research to find a cure, swimming in the sea and taking my grandchildren to the beach are my dreams, I hope one day they will come true🙂

@BenSiegler 2 жыл бұрын

Not all disabilities are seen by the naked eye...

@dixiedawnmillergoode6850 Жыл бұрын

15 years trying to figure out why I scream, jump and go into full body muscle spasms at the slightest startle. It made me a horrible person to teach my sons how to drive, Lol.

@tamarahavens678 Жыл бұрын

You definitely spoke my story. I’ve been through it all since October 2014 and just had the gad antibody come back positive. These doctors need to be held accountable for the dismissals and making someone that is so sick isolate due to no answers and trying to make them believe it’s a mental condition.

@kenyaanderson3975 Жыл бұрын

Tara, you are an amazingly courageous person. Thank you for sharing your life and purpose

@newenglandcoast7121 Жыл бұрын

This is heartbreaking and frustrating. I experienced a similar experience (different disorder); I was accused of "drug seeking" as well. To add insult to injury, my insurance company accused me of "doctor shopping". It took me 13 years of specialists and diagnostic testing to get properly diagnosed, to only be told I "just have to learn to live with constant, severe pain". At times, during bad flares, I want to give up.

@IAMGiftbearer Жыл бұрын

I found it very interesting that she mentioned problems with her autonomic nervous system being part of this condition. I had a terrible experience in 2015 of being dismissed (not only figuratively but literally) from the biggest healthcare system in Georgia that is basically a monopoly, as it's been buying up other hospitals for years. They sought to discredit me to cover their ass for their slowdown and stoppage of testing and my resulting decline and increased level of disability. I am still struggling to get to the right professionals to this day. I had to make grievances all the way up to the federal level, tried to get the news media to do a story, even looked into taking legal action to force the facility to remove false and defamatory stuff that was written in my chart which did bias doctors outside that system and significantly stymied my diagnostic process. People are afraid to challenge them openly so I found myself fighting an uphill battle. I came to the conclusion that I'd have to wait until whatever condition I have would have to get so severe that it was glaring doctors in the face before going further. There is a definite sacred cow factor which assumes medical opinion is fact which is at the core of all complaint investigation criteria of current regulatory agencies over healthcare and doctors. This is one disease that is a distinct possibility considering my range of symptoms yet the area I live in is so controlled by the healthcare system that went after me when I spoke out that it has been hard to find doctors who do not have some relationship/dependence on them. They are the only system that has a genetics department, for instance. Their competitors refer people back to them for genetic testing, and many use their radiology departments and other facilities. There is a real need for independent medical practices in Georgia where you can get real help not tainted by the stranglehold this big system has on the state. I'm on Medicare and Medicaid and it is quite an involved process to get Medicaid to pay for out of state consults and your expenses for your stay in a hotel and travel for the days you are seen by these top tier specialists. I lost out on two out of state consultations because PCPs did not want to fill out the forms but wanted a neurologist to do it instead. Neurologists were a big part of the problem as they were quick to write it off as something "mental" or fake, so it would take alot to convince me that anyone local is genuinely going to look for the real underlying condition, especially a rare one. It seems as though the vast majority of doctors these days just want routine work to do and things they can easily solve. Many don't consider rare and complex cases worth their time. They go so far and no further and are not looking for "zebras", usually ending the process before they come close to considering rare conditions. I run a Facebook group called I Told You I Was Sick and will share this video with them. Maybe the two organizations will be able to help a number of people in the group in one way or another. I subscribed to your channel and may be contacting you both myself as well if there may be a way forward in my own process.

@user-wn3kw5jj9s Жыл бұрын

Hi Tara! I'm going through a very similar case, and it's horrible to be just judged or ignored, E R visits ... It's really worrying. Please reach out to me. Where can we go, . It's just chronic pain pain, spasms, very weakening and painful no one understands!

@kdcbattlecreek Жыл бұрын

I'm in year 4, diagnosed year 1. But have changed hospitals and I need to know how to communicate with the assigned neurologist, who wants to take me off the meds that have stabilized me. So glad to see this and hope I can do something!!

@vernatweddale3266 2 жыл бұрын

Brilliant! I just spent the past 4 weeks heading to ERs, 5 day admissions to neuro units, 2 days at home, 5 days on neurology care etc. I’d be doing cartwheels of sheer relief, right after the lump in my throat unfurls . . . ⚡️ 🤯 🤸🏽‍♂️ 🔥

@carolinafagundez4110 Жыл бұрын

Thank you for this!! 💙

@pam164 Жыл бұрын

They put everything down to anxiety and a person knows their own body.

@pam164 Жыл бұрын

I remember 30 odd year ago my muscles twitched all over my body( still do) and I was treated off the Dr's like I was insane, now I know its called benign Fasculation.

@ingritamoreno 7 ай бұрын

Thank you both for sharing this. I think you both are very blessed to have well at least in the case of Lea her parents close by to help her. I do not know much about Ilea hi by the way! I assume you two still work at your jobs and that’s another blessing. I wish you both only the best ❤

@thepuzzledgoddess 2 жыл бұрын

Thank you for this. I’m on this path. I’m not sure where it’s leading. I’m going to further research this condition. I can relate to who am I now after loss and being compassionate towards ourselves and others. I am repeatedly told I present well so I am overlooked or not given the supports I need. Thanks, again.

@nicksg3002 Жыл бұрын

I wish there was an update of this lady's health and talk more about which problems she experienced during her pregnancy because I got H.E.L.L.P syndrome and is so little known too that I wonder if pregnancy ignate this invisible diseases. Right after my hellp syndrome, I developed breast cancer, high liver enzymes, osteoporosis, and rheumatoid arthritis...so far. Celine Dion just anounced her diagnosis too. I wish all the best.

@dakotaberlinkski5459 Жыл бұрын

Hi I have stiff person syndrome I’m 43. Life is different looking for info

@trekfortruth2841 Жыл бұрын

My personal experience includes Lyme disease and mold illness. Curious if any of the folks here have looked into mercury and other metal toxicity? This area was key for me.

@melissaarcher256 26 күн бұрын

I'm sorry. My Mom is in ICU right now with respiratory failure from sps. It's been a long rough road and if the insurance company hadn't made it so difficult to get her baclofen pump refilled, she wouldn't be on a ventilator right now.

@InvisibleDisability 12 күн бұрын

How horrible! 💔

@lisamerritt5531 9 ай бұрын

I m have small fiber neuropathy with dysautonomia, Sjogrens and now SPS. I think SFN and SPS are linked.

@corazoncastillo910 Жыл бұрын

Wow at least there are people like me calling me a whiner a complainer a numbs on my right leg till now I have it doctor told me I have to live with it. I did not get for six months at I don't have diagnos they can't find what is wrong.

@deborahmoore6875 Жыл бұрын

I have gone though this process for 7 years now. I can understand all you are saying but have had great difficulty finding support and help. I have seen many Doctors with pain and severe anxiety to start. 7 years later, It feels like I fell off a roof with fatigue to start the day and severe painful stiffness just to start each day. Diazapam has been the biggest helper to help me look functional and look fairly normal. I'm worried because the Neurologist that helped me to run tests and get second options is now gone with new work. I am working hard to find a Neurologist that will see me. All Doctors except the one who watched the change with Diazapam want to take me off! I see you Tera and understand. I am alone now after my Fiance of 10 years leaving and lossing my Doctor.

@patriciadendiuk9603 Жыл бұрын

I have had DBS was diagnosed with dystopia 2014 but now I have been falling many times & about the last few years it’s been my feet& legs ache a lot I have to walk with a walker. Can you tell me is a Dr. In Ont. Canada that I can see? Thanks.

@jfouts1979 Жыл бұрын

You cannot make a primary care doctor do his or her job though....

@susanmcmichael5607 Ай бұрын

I am waiting between 6-7months to be seen by a movement specialist neurologist. I was also rejected by Mayo. I live alone, have Alzheimer’s mild and Ataxia…I’m 75 years old. I don’t know what to do…

@InvisibleDisability 12 күн бұрын

We are so very sorry to hear this! 💔

@fekeetsa 2 жыл бұрын

I've had sps for 30 years but no dx until 2015. At least there is a neuro muscular specialist in my area, and I am somewhat stable. None of my friends understand, because I look "good", but just trying to look ok can be exhausting. And I have the double whammy of cerebellar ataxia. Make sure if you do have this disease, leave your brain at least to a scientific/ health organization studying these rare diseases. I've been a guinea pig for so many drugs that don't work...sigh. until the major neurotransmitters are better understood there will be no progress. If you believe you or someone you know might have the symptoms of sps a simple blood test will tell. GAD65. Ask a physician to do this simple blood work and then help cab be received. There are a couple of drugs and some more intrusive work that can help slow progression. But it will never be cured unfortunately.

@chacha3209 Жыл бұрын

NEVER SAY NEVER! Perhaps not in your lifetime, but please don't sabotage yourself with such negative hopelessness for the future! I'm starting a chat group! If you're interested, please, everyone suffering from what they think might have SPS contact me!

@Katie-vy5rd Жыл бұрын

@@chacha3209 how do we contact you?

@lauriecarlson4672 Жыл бұрын

And there are those of us who are GAD Negative but clinically we are diagnosed with SPS. I've had it since 2004 myself. The simple blood test did NOT work for me. I have to remind Neurologists out there that that 40% of us ARE GAD Negative. SO frustrating!!!!

@lorriebell1094 Жыл бұрын

Thank you for the Information you posted. ( Blood Test GAD65) I didn’t know what to ask for.

@lorriebell1094 Жыл бұрын

@@chacha3209 did you start a chat group?

@mariawild8917 Ай бұрын

My friend eventually got to see’The neurologist. She was told it’s down to trauma/ptd and the treatment needed is counselling. Does any one here have any thoughts about this? Ty

@WendysCove Жыл бұрын

CELINE DION HAS JUST BEEN DIAGNOSED WITH THIS....

@thomascrews8598 2 ай бұрын

Tara, are you still extremely symptomatic with your stiff Persons Syndrome and your autonomic dysfunction? Dr Crews

@stevenjordan6389 8 ай бұрын

Tara you have contact info. on the 20 outfits helping people with SPS,maybe yours too. Iam 41 years in.need out or help,please help.Thanks.I wes treated for 3 years then shut out.I have evil in my family.

@lindabacas2164 Жыл бұрын

How do I find out what I have.? Five years of treatment for CIDP AND now being told I don’t have that. But again I’m in extreme pain every day. And have no idea what I have.

@InvisibleDisability 11 ай бұрын

💔