Hereditary Spastic Paraplegia (HSP): The Rare Disease No One Talks About 

If you stumble across this video, please let me know where you're from and what websites/services you have used to help you. Also, if you’d like to watch an interview with Jason, head here: ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-r4B3Ehyyql4.html Thank you 🤝

I was diagnosed at the age of 7 with HSP and was told I would be in a wheelchair by the time I was 12 but now I'm 21 and I'm climbing mountains, working out daily and have a super physically demanding job which requires a lot of balance too, I'm hella thankful for what type of person I am due to Hsp, I let it drive me towards being better than anyone expected I could be, hope everyone else who has it doesn't let it hold them back

Excellent video. I believe the disorder is underdiagnosed. People don't know enough about it.

I started experiencing symptoms at the age of 14 and only received my official diagnosis of complex HSP (affecting both arms and legs as well as my torso) + generized dystonia in January of this year at 20 years old and am now in a wheelchair about 90% of the time. i enjoy learning about peoples experience with it as i find it so fascinating to see how even people with the same mutation can so vastly different in their experience with HSP. I hope that there will be more research about this for other people and families who experience HSP

Great video and really inspiring to hear Jason’s story with HSP. Just a small correction, it’s actually an upper motor neurone, not a lower motor neurone, disease that leads to spasticity and weakness.

I have HSP and recently discovered I had a rare gene being SPG79A. So not only do I have HSP, but ataxia as well. Everyday is a struggle but I am still walking with the aid of my rollator and I’m not giving up! I have had this disease for 17 years now and I’m almost 67- years-old.

Thanks a lot for this video. I got diagnosed with HSP SPG4 since 2 months (finally I have a name). But I'm not planning to let anything go. Still doing a lot of sports (running, swimming, cycling, climbing etc.). I'm happy to see that there are so many people fighting and succeeding against HSTP! Keep on working.

Hi Hayden, thanks for the video, I also have HSP (have had symptoms for 10 years) and now at age 23 still climb mountains, play basketball and ultimate frisbee. Struggles are different every day but working out, hydration and some good food has really helped!

My father has had issues with walking since 2009… many neuro and studies done with no results. Today he seen a neurologist that specializes in muscle disorders is testing my father now. Starting with genetic testing. We are from PR/PA/DE

This was so wonderfully, and empathetically done, thank you with all my heart! When in high school, my Brother would tease his now wife about how klutzy she was. They are now 44 and she just received the diagnosis of HSP-4. She’s devastated, can’t play with her two little girls anymore, and she also now owes the hospital that diagnosed her $40,000. Because America. Anyway, thank you again for such a concise, clear, but positive video! 🤍🙏🕊

This is a great video and I am very happy for Jason in that he can continue to exercise. Unfortunately not everyone with HSP has that luxury and one of the big symptoms of HSP is fatigue. Struggling with that is the hardest part for a lot of people.

Thank you for sharing this! I have been diagnosed with HSP since I was 5! They originally diagnosed me (and my father) with CP, but something told my mother that was not right. Anyways, there’s not a lot of information out there about it and in my older years trying to learn about my own condition has been challenging. Thank YOU!

Family is filled with HSP. Just starting out with my diagnosis. Thank you for this incredibly informative video!! Hearing Jason's moment of realization of Jason seeing his reflection really strikes home with me!

Great video. I saw a patient with this the other day and came here to learn more. Jason is inspiring.

Great video! I was diagnosed with Ataxic Paraplegia prior to anyone knowing much about HSP back in 1981. 20 years later I was put in touch with a neurogeneticist via a friend who worked with as a clinical neuro nurse in a prior life. Unfortunately the intervening years caused a lot of damage to my back and shoulders as I was using them to swing my hips over to walk. Spent years in neurophysio learning to stand from sitting and walking properly. One thing that's worth mentioning is as it is a degenerative/progressive condition when balance and the ability to walk well goes get into a hydrotherapy pool for walking and stretching exercises. I've also found swimming in a heated pool helps to maintain physical activity. These days if I'm walking more than 100m I'll use a wheelchair. I spent a long time loosing contact with friends and family through an inability to be involved in social events or even something as simple as Christmas shopping with my daughter. The chair has given me a level of independence I didn't have previously. When you find your not doing the things you once did don't hesitate to make the change. Just had hand controls put into a new car as my HSP results in a lot of spasming, everything from tiny muscle spasms you can hardly see to rather violent movements that have now left me with chronic pain in my knees and muscles. Good to see the video reinforces working your core and other muscle groups for balance. It's all imperative to managing HSP and maintaining a social and 'normal' life. It's worth talking to your trainer or physio about how you can integrate some exercises into everyday life. I'd have hours of nothing but 'maintenance' if I did all my exercises on their own. So I read on the floor while doing some stretching, and stretch while waiting for the kettle to boil or toaster to pop. If you ever do a follow up to this would be interested to hear about how others manage side effects for antispasmodic and neuropathic pain medications. That's been one of the significant difficulties for me personally. There's also the psychological side to manage as well. Loosing the ability to do things we enjoy or that make up 'who we are' can be a difficult thing. So a well grounded support network and health professionals around can help ease the times we're frustrated at loosing 'one more thing'. Thanks for the video and best of luck with the future Jason!

Hi Hayden, I would like to suggest a change to one of your slides... in the recap section at 4:33 it says: HSP is a rare disease that affects lower motor neurons. This is not generally true, the usual pattern of involvement is in an "upper motor neuron" fashion. SPG4 mutations in particular usually present as UMN disease. Otherwise, fantastic video and well done Jason! He is a real inspiration!

Thanks to the video information provided by Mr., we are the HSP patient group in Taiwan. Thank you for providing the latest information about HSP. Welcome everyone to come to Taiwan and discuss HSP further and offer my best wishes.

My father suffers from this. It has worsened over the years. I wish there was a treatment for it... Thank you for sharing this inspirational video.

This gives me a lot of hope. I have not yet been diagnosed by a doctor that I did inherit the family hsp. But I already at the age of 24 have so much tension in my legs to my toes, specifically on my left leg. You can tell I stumble on my life side the most, my shoes have more wear markings on the toes. By my grandma mid 50s she was wheelchair and Walker bound. My father, can barely walk now in his late 40s but he (another ispiration) keeps pushing. This gives me hope that with exercise and guidance by those years I'll still be a to walk with my future grankids

I tried to talk to my doctor in my early 20's. At the time, my Grandfather & mother both were diagnosed with this. The doctor laughed at me, told me to loose 100 pounds & basically called me a addict thinking I just wanted pain medication. It was really disheartening & I gave up and just lived with my syntoms for the last 6-7 years, but my Uncle was also recently diagnosed & my syntoms have gotten worse. So next week I have an appointment with my doctor (A different doctor who I've actually grown to trust) to discuss this with her. I really hope I can get some help. Thank you for this video.

Thank you very much for this video. It was very easy to understand and informative. I'm 53 and have suffered with the effects of HSP since I was 5. Did not find out what I had till I was 46. I saw the video in one of the support groups on Facebook and I also shared it on my profile. Thank you again and keep up the great work. Michael Hughes

Just now checking this video, I myself have HSP and it makes my one true love of drumming so frustrating, thank you for this

As a fellow sufferer, it's reassuring to know the exercises l do are in line with what has been suggested. Thank you.

Thank you for putting this together. I have SPG 4, both brothers and mother. It's really tough slowly losing the ability to do things I love. Powerlifting at gym and hiking. It wouldn't be as bad if more people knew about it and awareness.

thanks for the vid, all my family got HSP in their teens, I thought it had missed me, but then in my 30's I was under extreme stress in my job, which brought it out for me. I use a wheelchair to prevent tripping over, this had made me put on weight, which is also unhelpful with HSP.

Thank you for this brief, informative, and hopeful video.

All my kids carry the gene for HSP. It runs through their father’ maternal blood line. Their grandma and most of her siblings, I think 7 of 9 have been affected by HSP in varying degrees with most of the affected ones losing their ability to walk altogether. My children’s uncle has lost his ability to walk normally by the time he was in his mid 30s. I am at loss for words on what to feel about this. I hope my kids live healthy lives as long as possible until they grow very old before this cruel diseases manifests

Hayden...thank you very much for this informative and encouraging video. I was diagnosed with HSP last year....but have had the symptoms since 2013....I'm 55 so it makes it more aggressive I was told. My doctor believes that my uncles on my mother's side (died before I met them) had HSP instead of MS....which is what was believed by the family. I really respect Jason's courage to move forward....I can truly understand his struggle!!

I was never diagnosed with it but I always had a bladder problem, tremors in lower legs, terrified of walking in public places without a wheelchair.

Wonderful explanation of HSP and everyone who suffers with HSP should have their Family and Friends see and listen to this. Thanks Jason you are an inspiration :)

Thank you for this. My grandmother was diagnosed as having MS for 20 years before she was recently diagnosed as having complex HSP, and her mother was diagnosed at the same time as well. My mother has began to show some early signs of hsp, and not knowing much about what to expect besides my grandmothers severe case, this has given me a lot of hope

From South Africa my son was diagnosed 8 years ago and my daughter 12 years ago both in there early 20st

Thank you for this video. I am 64 and was recently diagnosed with hereditary spastic paraplegia by my neurologist, after considering symptoms and family history. My first born child passed at the age of 26 from affects of what my neurologist believes was undiagnosed hereditary spastic paraplegia. She has not yet begun performing any genetic testing. I also have a history of brain scarring from a right hemisphere hemorrhagic stroke I suffered in 2015, which left me temporarily paralyzed on the left, neck down. I have since recovered my ability to use my arm and leg on the left, although I do still experience residual weakness as well as frequent and sometimes severe muscle spasms. I also experience hyperactive reflexes in lower limbs. Definitely more interested in addressing the issue through nutrition & movement than pharmaceuticals. Very interested in any suggested resources along those lines. I, too, am a fighter. I've long planned to make it to 100, & I don't intend to let this change that. Thank you again✌️💖☀️

Love the video Hayden, very informative. My daughter has complex HSP, we already know Jason through a support group. Thanks for making the video, I'll be sharing it on my daughters page to try to help educate people.

Cool video! I like how you give such a comprehensive overview, can’t wait to check out your other videos. One thing though...HSP is an upper motor neuron disease (causing muscle spasticity), and not LMN (muscle flaccidity).

I greatly applaud the determination of this young man. I myself am an avid bowler, and for almost ten years I've had to deliver the ball just by standing at the foul line and releasing it with a half-step. But I do it thrice a week! It is my upper body physical workout and is a very social one. Again, I admire everyone involved here.

My 6 year old daughter has HSP she went from walking and dancing to crawling. Thank you for making this video💖💖

Super video. Easy to understand. Thanks for making this. So good to see your face Jason.

How do I save this video. This is the best descriptive of my HSP that I have seen. Just seeing this, I have to call my neurologist! Never have I ever been told I have complex HSP. But it looks like I do.

This is superb! (My husband has been diagnosed with HSP.) Thank you so much for sharing it - also thanks to all the people who have added useful advice, which is incredible. This has confirmed a lot of the strategies I've been nagging him about (strength training, swimming etc). Thanks again!

This is me. I was born with sle I have about 9 other auto immune disorders. Told I would be in a chair three yrs ago .just got home from hospital last week. A doc diagnosed hsp 2016 now today I woke unable to walk on my own my wheelchair is now my world . Thanks for this ps I am 48 nowp.ss I live in Sydney Australia

My little girl has this we just found out thanks for posting this

I was diagnosed when I was 14. I was born with it but they didn't know what it was until I was 14. I also have learning challeges with it. They told my parents that I may never be able to go to college but guess what? I'm in college studying communications with a concentration in both video and audio production and I just got a job at Target. I'm 21 years old. I don't drive yet but I am hoping someday I will be able to drive. Everything is a little bit better for me now since I started seeing a homeopath. I feel so much better I have not fallen in 2 years. I just gotta be positive with my disease.

Ik heb als embryo zelf een fout in mijn spast gen ontwikkeld. Ik kon laat lopen en liep raar, ik heb nooit kunnen rennen. In mijn tiener jaren begonnen de krampen in mn kuiten en later in mijn hele benen. Nu in minder dan een halfjaar moeite met praten, slikken, last en pijn van mijn handen. Ik val zomaar om wanneer ik ga staan. Kramp in mijn tong en handen in de nacht. Binnenkort start ik met baclofen als eigenlijk laatste hulpmiddel voor spierspanning en spaspmen etc. Ik ben nu 17

Thanks for the video, I have been living with HSP for 7 years. I have the complex but I’m 38 doing all I can do to not end up in the wheelchair. I try everyday to run. One day I will and it will be the one of the happiest days of my life..

Way to go Jason!

I was diagnosed around two from walking on my toes.Im Pretty stubborn and that has helped a lot and mostly my faith.Im 56 now and my hamstrings feel like their in a vice but not ready for a wheel chair.Ive never met anyone else with it so this is nice to know I’m not alone😀

I am currently undergoing genetic testing for this disorder. But it definitely fits me to a T. It’s nice to see other people who’ve gone along this mystery path with me.

Great video and by the way you are doing a great job with your HSP disease. I am from Germany, showing all symptoms of HSP since I turned 40. Had several problems with bladder and walking before but nobody had a clue what it might be. I am not genetic classified yet. Had some strange neurologists before. I am in a german support group for HSP. If you feel like you can contact me.

I suffered with HSP4 for 40 years and was genetically diagnosed a month before my 41st birthday last week. I've had a pretty tough and confusing life so far and it's not getting much easier.

I started abnormally waling at the age of 4 and as I went to doctor after doctor and underwent multiple test I was finally diagnosed with HSP at 16 years old I used to not use anything to help me walk when I was in elementary school as I got older and moved on to middle school I started needing to use a walker to help me get to post A and point B. I currently still struggle with trying to process that I have it but hopefully one day their will be a cure but I will not give up which is why I want to be a Medical laboratory technologist and do research not only on HSP because it is so under diagnosed but also things like cancer and other rare diseases I want to help people in hopefully giving them the answers to their frustration like me. Thank you for sharing this video.

thank you for this. i was diagnosed with hsp aged 49. they believe it to be from my mums wonderful genes. i have steadily gotten worse during lock down with everything closed. i walk so far n then that's it my legs just stop. i get all the tight hamstrings where i end up walking on my tip toes. sadly i also suffer joint hypermobility syndrome too n my worse area is my lower limbs. so between the 2 im having a bad time. thank you for showing me what stretching etc can do. im going to join local gym where the PT won PT of the year 3 yrs in a row for the UK in the hope him and his team can devise a program for me to regain muscle mass n strength. i can cope with pain n bladder issues that come with both conditions but i refuse to accept im wheel chair bound. yes like most ive read ive fallen over alot etc but sometimes im not sure if this is HSD or HSP they intertwine in some symptoms. are there any uk fb grps/ grps i can to learn more. my gp n neurologist more or less say get on with it n take ur meds but thats not good enough. ive asked for physiotherapy n been told lets sort sleep first. feel like im being fobbed off. i had to leave work due to it or end up in a wheelchair. my wish is to regain strength in legs so i can work again n have a life. sorry for long essay but its first time ive seen something that actually gives me hope.

I was born with HSP, over the years it has done nothing but progress to the point that I can hardly do anything for myself with out some help. It effected my legs from the beginning but now is attacking other parts of my body like my intestines, lungs and arms. I will continue to fight it and at the same time; I will continue to go through it in a positive manner. I have found humor in wheelchair jokes. This is my coping mechanism. I was 10 at the time that I was diagnosed by Walter Reed hospital back in 1978. I literally became the human Guinea pig the week and half while I was there.

Great video, easy to understand

We have HSP on my mom's side of the family. My mom and the family didn't know what it was called, but called it "the crippling disease". It wasn't until several years ago when she was diagnosed that we knew what it was called. From what I've read on symptoms, I think I may have it. Time will tell. Does or did anyone have issues with toe walking? I toe walk only on one foot, and am wondering if this could be a symptom, I haven't really gotten a clear answer with research.

Thank you!! This was really useful for my coursework!

WWith me, it started when I was eleven in 1973, before there were CAT scans and MRIs. I did not have genetic testing until 2017. Until than, I was told I had idiopathic spastic diplegia. After the testing, HSP, even though no one on either side of my family had/has anything like this. As the years went by, I went from waddling when I walk to needing leg braces, canes in both hands and a walker. I have the Baclofen Pump and, in a coule of weeks, will get new leg braces that were recently put on the market. This disability wrecked my life. The monastery I belonged to paid for the Baclofen Pump to be put in me, but they though it was a cure, and cast me out when the physical thereapy and refill bills came in. I wish they would find a cure.

Awesome video. Thanks

I was diagnosed with HSP, SPG10 a few months ago. The leg pains and spasms are ridiculous.

In my whole paternal and maternal family m only person with this disorder(HSP) I'm 23 years old and during my early life i even didn't notice that m suffering with such disorder...I used to run and play but frequently i fell while walking or running.. Whenever somebody says how do u walk? I always wondered! Is there anything strange with me? Then i saw my self in mirror while walking. It was shocking for me. We consulted neurosurgeon at age of 16 and i was on medication for 4 years but no appreciatable result had seen. Then i quit medication. Recently i again consulted with neurophysician and he told that i have HSP. I am on medication again. Hence there is no proper treatment of HSP but Dr said that Medicines provide support indirectly. I have poor balance. At home I can walk on my own,but outside from home i hold my sibling's hand for walk bcz of low confidence and poor balance. I hope for the best in future❤

Great video, thank you. It hopefully will help people understand better what is going on. I recognize the path he went trough, much respect how he handles it. I started tripping and falling down about 20 years ago, it took 10 years to find out what was wrong. I was also convinced that doing nothing will only make things worse, so i started exercising to keep myself mobile for as long as i could. About 3 years ago things went downhill fast, couldn’t step without sticks anymore and increasing the dose of medication didn’t help either. I now have a baclofen pump and use cdb oil, rest of medication i stopped. I go for stretching and hydro therapy on a daily base. Especially the hydro therapy works for me good. I still used to be able to ride my electric bike and walk with sticks up-to a couple of weeks ago. Since a year i am complaining about pain in neck, shoulders and wrists. Again lot of research, tests etc. Now the conclusion is, I put too much stress on my system by riding the bike and trying to walk. So now this is also gone unfortunately. I just want to warn to not overdo the exercise for strenght, my specialist tells me this caused the situation i’m in now and have to accept it. Luckily I have a lot of fun in the hydro therapy and this I can continue to do since it puts no extra stress on my system. I wish you all the best and keep up being positive with the way you’re dealing with hsp

SPG4 runs in my family. at 2:54 you say it occurs in late adulthood but at 5:47 you say his dad and brother both developed it in their 20s. I'm 25 and feel I have some of the symptoms.

Hey, i was diagnosed at the age of 3 with HSP. I had that rare disease from my Mother and she had from my grandfather and my grandfather got it from his mom. I have brother and simptoms of hsp we remarked when he was 15. My kind of HSP is more more expressed than my mom and grandfather. I have one questions, how big are chanche my children to have HSP? I think is more than 80% 😔...

Thanks for this informative video. I started experiencing systems of the condition a little more than two years ago, stiffness and severe walking problems, the strange thing is I can ride a bike, elliptical at the gym and rowing machine with little trouble. I am 63 now. The other possibility is nerve damage due to vitamin B12 deficiency. Best of luck to you and all!

I am been dealing with hsp since I was 8 but now I am in a wheelchair for the last 6 years but I want get back to walking but it is not easy

my son affected hsp3A diagnosed 2years.now he is 2.5years old.we will do some excercise last 6month but angle titenes not reducing.pls share some excercese for my son

My dad has hsp and wasn't diagnosed untill older age [ 30-40] he is now 43 and was diagnosed with unset parkinsons . It really is a horrible disease

I have something that seems to be in this family of disease but have yet to find a dr who can determine it exactly. It sounds just like this, but its only my arms and I've had the problem since I was a kid (Now in my 40's). I had learned to live with it while I was young as it wasnt too bad but as I have aged its just got worse and worse and its now to the point I can bearely hold a pen/pencil and write for more than a minute or two before the muscles tight up, spasm, and sometimes lock up/dont respond properly and shoot pains up my arms and I only get relief when I curl my arms up in a wierd curl. Every dam dr Ive seen since a kid just shrug as if I'm making it up because they cant find anything in blood tests. Claiming it sounds like arthritis, while I have none of the other signs of arthritis or blood test results.

Father have it and he’s on bed from 15 years and its getting worst 😭

Hello people here, I have seen so many comments where people have shared their experience with this disease My sister is also suffering with this disease She is 27 years old and her condition is not improving She walked on her toes and dragged her feet from an early age of 12 and was a bit slow in understanding things But from the last three four years her balance has decreased alot and she is getting slurry in her speech and urinary urgency has increased a lot She is some nights getting up in 3-4 times for washroom She falls a quite bit and takes support of walls and chairs Ordered a walker for here for going to washroom in nights Please guide me on how can I make her condition stable Thank you alot for the help in advance

thank you so much for sharing this video. Im 30 years old and I have had HSP since I was 20, im walking without any assistance most of the time (I'm making a lot of yoga and pilates). do you have an idea if I get pregnant and have a child it will increase the problem? do you know any woman with this conditions and bring babies? I will be very thankful if you can help me

I got diagnosed with hereditary spastic Paraparesis im the only one in my family has it ssso its rare

Well done Jason I have HSP 4

I was told I had it, I'm not really sure if there's a test for it or not, my neurologist just observed me walking , it has gotten worse the past few years and I try to fight it. My dad has it really bad, he's 83, he can't walk , he has a scooter and wheelchair. I'm trying not to get that far.

My wife have hsp we just find out after 4 year.just want to know what type of exercise she could do to help her walk again....thanks

I have one sibling with this what are the chances more of us have it coming down the line

I would like to know the surgery Jason had and where would you go to find a Doctor that does it. My son was diagnosed and is struggling with walking. We are in Ohio. USA.

Recently I also diagnosed 😢

Sir when I was 17 I got to know that I'm suffering from spg 11 that has damaged my nerves of legs and doctor said there is no cure it is increasing disease my nerves can even damage till brain your help will really help me bcz I have a single parent mom and she takes very much stress about me

Awesome! I was diagnosed at the age of 23 years. I have many difficults to walk! But i try hehe

I have SPG11 and SPAST(SPG4). No Pathogenic variant was detected. Both SPG11 and SPG4 are heterozygous for my case.

I have had HSP for 8 years now

When I was 21 I started having symptoms but no could find out was was causing them when I turned 48 I started having trouble with my vision iam 50 now and now iam limping alot that's when they found out I have hsp 47 a neurologist finally discovered what I have also a DNA test found I won't give up but I do hate the tripping and losing balance

I have hyper static paraplegia

Great video! I have SPG7

I have this condition. I was born in and live in Malawi. It's hard.

Thank you

Hi,is (tsp ) in any way related to hsp?I'm 42 and diagnosed with tsp,it's a real struggle,no known cure or treatment,if there is please let me know.

how to contact you hayden perno? my brother also suffering from HSP

is they a cure to put a end to this virus. thry cure for cancer and covid.😢😢

How did SPG4 skip a generation if it's autosomal dominant?

How did he pay for all of that? There lies the problem with U.S. healthcare. You can want to get up and go out and do those things and not have the ability or support group to do so. Also, he was given surgery to release the tension in his legs. I have begged for such a surgery and they keep telling me that it can't be done. Then tension I need released is in my quads, though, not my calves.

How were you when you sat and walked?

I have hereditary spastic paraplegia it's not easy to live with alot of physical therapy

I have hsp why are my feet turning in why do I walk the way I do I would like more information doctors know nothing but mange the symptoms

Is it possible to get rid out of HSP?

I was diagnosed with this spg11 at age of 13 Can this be cured??

Anyone out here with genetic Mutation on Feep 1 Exon 6 ? Ive got Double serine Missing Glycine Had genetic tests All my children affected And mom Grandma Etc

Lower motor neurone? When I look up hsp it says it affects the upper motor neurons

hlo ppl i.m suffering from para-persis since 1998 can anyone help me out wid it