What Is Hereditary Spastic Paraplegia? Surgery Story!

[@mo-hammadabunaser1367]

As a medical student, I am so happy you shared this with us, hopefully I will be able to recognize this unique condition if I ever came across one, and I hope you have a happy healthy life!

[@bobobandersnatch]

Mo-hammad Abunaser Ahh thankyou!! :D

[@Valerieceleste1]

I just got diagnosed with this...thank you for sharing I feel less alone now.

[@MrsTashaP1]

Valerie Celeste , where are you from. My daughter got her diagnosis today after years of tests. We leave in Melbourne.

[@Greentea_15]

I have HSP too, but the pure form. My legs are mainly affected by

[@caitlinellen6455]

Thankyou so much for posting this. I have the same type as you and it's so nice to see someone like me. It would be great to talk to you more!

[@Feenix102]

Hey there. I have been tested for HSP recently and am currently awaiting the results. Its amazing how similar elements of your story are to my own - weak ankles as a child (I also used to get very intense cramps in my calf muscles), had trouble with PE, etc. As far as surgery goes, I was referred to my neurologist by a surgeon, who discussed the possibility of surgery (they wanted to know why the deformity in my feet has occurred before operating). The procedure we discussed involved breaking my foot in half and performing a tenotomy, to try and straighten out my foot. I'm being put on Baclofen soon, but I can't help thinking that as long as the deformity is there things arent going to improve significantly. Ah well, time will tell I guess! Anyway, just wanted to share a bit of my own story, really - I hope today is good one for you, and I think you have shown great strength and bravery going through what youve been through with the operation you had. Take care. :o)

[@2539gary]

You are beautiful 💕🥰💫 Thank you for Sharing this, I also have Complex HSP, with no one else in my family. You described this condition so on point and authenticity. It’s like we lived as sisters, I have a lot of the same struggles throughout my life. You have a wonderful in depth understanding of this condition and I love your overall perspective I too feel “really excited and intrigued by have a rare condition” we are special 💕💫 Keep this up, it really inspires me

[@Jdjustsaying]

You're a beautiful young woman. I'm watching because my friend has this condition, hers was late onset (age 40). She is brave and fantastic just like you. Thanks for sharing, love from Australia.💗

[@bobobandersnatch]

Janet Donald Ah thankyou! Sending lots of love over to you guys :)

[@madisonbrigham1893]

Thank you for sharing your story! I have had HSP since birth. My grandpa, dad, and all 3 of my siblings and I have HSP as well. Hope you are doing well!

[@samanthaderrick1524]

My son has been diagnosed with this recently. So thank you for sharing xx

[@SuperHigear]

I wish you the best as you continue through life. I was lucky enough to make it to age 35 before any symptoms started. At the time HSP wasn't known; they said I had MS, that changed 17 years later to HSP. I'm now 66 and the struggle continues daily. With any luck they will soon find a cure that will bring you and other young people like you some relief. Stay positive & keep smiling

[@noonesmyname7327]

I've had this condition from birth. I was diagnosed when I was 5 but mainly it's just affected my legs and hips. I'm 39 now and still struggle every day. Thanks so much for posting this video and I really think your attitude is a true inspiration!!!

[@mickstickwheeledwarrior]

Thanks for sharing this I'm 43 and had HSP since birth love and light too you

[@clairehiggins7781]

Thank you for sharing you're story ,,, it's nice to know the experience of someone going through this from the UK !! My 9 year old son has recently been diagnosed with this ,,, we was originally told it was spastic deplegia 3 years ago but having gone through many tests including mri , emg etc it was the dna that finally diagnosed this condition ( pure form , type 4 ). It's still confusing for us as neither side of the family that we know of has ever had any walking problems .... me and my partner are soon to be tested. My son is doing Ok ,,, he's gone back to walking on his toes after surgery and has a lot of leg pain but he's always pushing himself. I'm going to show him you're video. x

[@bobobandersnatch]

princess tinkerbell Thankyou so much for checking out my video! I do wish all the best for your son! I bet hes a trooper! :3 Encourage him to walk properly after the surgery, itll be super tough to begin with but itll be so much easier in the long run. :) I am now 20 and i am still learning every day how to cope with it. I really wish you guys all the best! If you have any questions feel free to ask me on my social medias! ❤❤

[@DreamingButton]

Girl you're just so pretty! Wish one day I get the courage and 'steal' your hairstyle. You're awesome.

[@bobobandersnatch]

Thankyou!! Its so cool right? I do miss it!

[@kevinliu7393]

Thank you so much for sharing, you are a very strong girl, best of luck to you!

[@brookemabery2404]

Hey I am 13 and I have this condition as well but I don't have the side effects such as blindness and shooting pains. I just wanted to say I have been living with it for 13 years and it's very hard don't judge anyone for the things they were born with, you don't know how hard it is thank you.

[@powertotheplurals]

thank you for sharing your story so openly and clearly!

[@bobobandersnatch]

Thankyou so much. Thankyou for watching

[@annabelleparkinson9214]

Thank you for sharing this I have hsp pure I'm 26 with lower extremities the whole waddling and losing bladder and dyslexia and memory issues and my big brother has it too but also he is almost blind and everything else I have also we are in America it makes me happy to see others with this rare disease since I only have my brother to share this with me 😊

[@KieranMusicBrady]

All these comments are so nice, I also have HSP and it’s cool seeing such kind supportive people

[@edwardtoomey8355]

I started off trying to get information about HSP as I've been diagnosed last month but I found myself being attracted to you. Happy coincidence!!

[@SKENNEDY212]

Loved this video, im 18 and i got this condition when i was 16, i mostly limp but i cant run anymore. I will stay positive and try my best to overcome the disease

[@bobobandersnatch]

Scott Kennedy Thankyou for watching it! It can be tough, stay brave!

[@elijah-jamesmac2039]

Thank you so much for this, both my mother and grandmother have hereditary Spastic paraplegia SPG7, and I just got the call confirming that I have the same gene variation and that I will most likely develop symptoms later in life

[@upashna22]

More love n strength to you❤

[@ralphc7842]

Thanks for this informative video. I started experiencing systems of the condition a little more than two years ago, stiffness and 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 with this condition!

[@maranda67lambeth84]

I have hereditary spastic paraplegia spg10 and I’m almost in a wheelchair as I fall down a lot nice to know there is someone else has this

[@the-witch-with-wheels]

thank you so much good to hear a diffrent persons joarny

[@demetriamoore4248]

I haven't knew other people struggle with the same symptoms I have until I researched into the this disorder after being diagnosed in Rochester mn.

[@patrickjmoynihan]

Hi Thank you for posting this. I really appreciate all of this. My son has this same condition (spg4) and we are planning on this surgery in the near future. I’ll try to connect with you on one of your social media accounts. Would love to hear how you’re doing today.

[@randomvideos7295]

Thank you so much for sharing! Do you know what type you have??

[@jackienadia1340]

I have had this condition since birth and didn't know why I was different... I was diagnosed when I was 22

[@melissanewsome9797]

My daughter Shalayah has HSP she is 6 years old. Thank you for making this video as I'm just lost with all of this.

[@lauracox4017]

I'm currently waiting for a diagnosis for my 11 year old daughter as her dad and nan both have strumpell lorrain syndrome, you remind me so much if her, thanx for such a great insite to the condition. my daughters knees both face each other and her right foot is turned outwards im not sure about her hips I really hope she doesn't need surgery ☀️

[@splifting]

Hey! I have this condition! and my friend JJ also has it! We met on Reddit! I would love to connect with more people with this condition!

[@handcrafter-2008]

Like watching your video I would like to do a video like that about myself and my 2 boys. We have HSP.

[@ravenwda007]

I got my test results today. SPG11 and SPG4 are heterozygous variant and unknown cause. No pathogens.

[@brucevilla7490]

Why the hell don't they offer this surgery in the US?

[@chantellekaro4344]

Please come back to you tube, I love your content, witchy and hsp

[@BoboCoOfficial]

Hey! We have another channel! We post much more regularly on there about all sorts! 🥰

[@lendseypace132]

I have it to I have pure form alot of my family has it

[@ravenwda007]

Mine is complex. SPG11 and SPG4 heterozygous variant and no pathogenic cause. No family history either

[@GlueyPorch]

informative video, thanks. nice personality too

[@irepresentbread]

Hey I’m glad I found this video as I’m 18 now living knowing I have this condition ever since I was a child. But had no one to really talk to personally about it as my dad died when I was really young.

[@bobobandersnatch]

irepresentbread i am so proud of you and i will always be here for any questions you have! Or just moral support, i get that it can be difficult.

[@irepresentbread]

Thanks that really means a lot as I'm struggling to understand the condition, it gives me anxiety when I'm out walking or even standing as I feel I have constant eyes on me when I stumble clip my feet on curbs. And dont get me started on public transport.

[@iggyrap1141]

I've been recently told I probably have dyspraxia but... dyspraxia is developmental and I walked fine up until a year ago and I'm 14 and I have theese symptoms

[@Frewtsalad]

Well done. I realise this is old, but can you recommend any international support groups for young people with HSP? A 17 year old has just joined mine with very sudden severe onset and no family with obvious HSP so I’d like to find them some supports.

[@ruthvargas6988]

Could you tell me the name of the surgery you had done?

[@zrusso8731]

My daughter was diagnosed with cerebral palsy at age 2 and she could walk but suddenly she started to get worst and she was diagnosed with lupus so we thought it was do to her lupus the weaknesses in her lower extremities but she was getting more stiff and now at 21 the Dr. Did DNA test and turns out that she was missed diagnosed with cerebral palsy. Her condition now is HSP I have no idea how this will affect her more due to her lupus on the side 😔

[@chantellekaro4344]

thanks for sharing, love it

[@bobobandersnatch]

Chantelle Karo Thankyou for watching!

[@factsworldhub339]

suffering from spg11 HSP from India

[@MrsTashaP1]

Jitin Vasnani my daughter just got her diagnosis today...

[@Not_a_snake]

My Neurolgist believes I have this condition. It didn't show up till I was 24, I'm now 27. I had tendon release surgery in April, on two tendons in my left ankle. I wear AFOs to stop foot drop.

[@ashleyward3854]

I have hereditary Spastic paraparesis but no one in my family suffers from it

[@Greentea_15]

I somehow got it from my great-grandma- No-one else had it

[@kyte.the.adventurer9748]

:-) really love your hair in this video

[@lindydavidson4901]

I just got diagnosed with this a couple days ago

[@lindydavidson4901]

I got diagnosed with this early era this week

[@iggyrap1141]

I faint as well I go to the toilet so often its annoying af I'll drink 3 sips of a drink and I go to pee like 2 times an hour my legs feel weird like my knees feel like there is a band around it feels very tight I walk more towards my toes and I kind of lightly bounce and my big toe on my left leg drags slightly 2 years ago I walked normal I just had pain in my legs now my legs will just buckle and collapse going up stairs really hurts I legit feel my muscles like being pulled idk weird feeling could I have it?

[@davidadam5409]

Can you please provide us which country in hospital u did ur surgery

[@ashleyward3854]

I have hereditary spastic paraparesis but it's not hereditary as my the gene hasn't been discovered I got diagnosed in 2013 I'm 28 now

[@heathertez7352]

I sat just like that as a kid. Lol! I have HSP also. Oxoxox

[@hanadykh3008]

hi Beckii. 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

[@sharonnickason4902]

My daughter just had a baby, and it didn't make her HSP any worse

[@kyte.the.adventurer9748]

Glad I found this video... :-)

[@natalieh325]

Hi, I hope you don't mind me asking, but what hip surgery did you have?

[@bobobandersnatch]

Natalie H It was a bilateral femoral oesteotamy? They broke my bones at the hips and rotated them outwards so my knees faced forwards! :)

[@natalieh325]

Beckii Bobo thank you for replying, I really appreciate it :) wow, that's sounds pretty major surgery! Is it okay if I ask what other symptoms you have? As I've been diagnosed with HSP but none of my symptoms seem to fit.

[@bobobandersnatch]

Natalie H No problem! The operation was for another very common thing called Internal Femoral Torsion, so not everyone will get those symptoms. I get strong aches, shooting pains, twitches and spasms, and tightning of muscles. :) im glad you found my video!

[@natalieh325]

Beckii Bobo I'm glad too :) not many people post about this condition. I don't have the same symptoms as you. I wondered if you know anyone who has got the same as me which are I've lost my ability to walk and talk?

[@bobobandersnatch]

Natalie H losing the ability to walk seems like a common yet severe symptom, i have days where i am unable to walk due to the stiffness of the muscles. I go on crutches or in a wheelchair when needed. The loss of speech however? Im not sure on that one. Im only new to the condition myself so im not sure. Because this is a nerve based condition i assume anything is possible with it. I have gone temporarily blind due to it.

[@ranasilver2070]

I have hsp amd feel shy to walk aroumd people .. they keep staring at me

[@randomvideos7295]

Does anyone have SPG3a?

[@LyranPrincess6913]

I want to hear what you’re saying but this music makes it hard. Can u do another video on this without the background music?

[@WobblyLance]

I have this, and it sucks.

[@Chris-os5kh]

Anyone in U.S. with it

[@desilu54]

my doctors believe I have this condition I have trouble walking and have to use a walker . I can't walk 2 feet without it. I'm 40 and my symptoms started about 8 years ago.

[@bobobandersnatch]

Lisa OBerry rhat really sucks, i hope my video helped you with any info about it! :)

[@winifredodonnell2163]

Great 👍 normal human person

[@gregoryallan3137]

Stay cool

[@Dad3601]

Great information video appart from anoying background music