Hereditary Spastic Paraplegia community

Hereditary Spastic Paraplegia (HSP) is a group of rare, inherited neurological disorders. Their primary symptoms are progressive spasticity and weakness of the leg and hip muscles. The condition is characterized by insidiously progressive lower extremity weakness and spasticity.

HSP in Germany by Tom Wahlig Stiftung published 16 days ago

 


Video in German language for Rare Disease Day 2012. 

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Our life by tinalee published 18 days ago

A journey of love life and all it's messy details 12 years ago I met the man of my dreams and fell instantly in love. He had been diagnosed with HSP 20 years earlier. It never really mattered to me I was in love and knew that I would spend the rest of my life with him. We married two years later and the next year we welcomed our healthy baby boy into the world, 17 months later we were bri...

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Family misdiagnosis by waddles1 published about 1 month ago

Always assumed our Mother had MS but after being diagnosed with HSP did some digging and found out her father had 'paraplegia.' My sister, Pam was diagnosed with MS about 15 years ago. The assumption was that as our Mother had MS she had inherited it. Our mother died in 1974 and had symptons since the early 1950's. When I started to trip and walk a bit stiff legged, I was diag...

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“Quality of Life” Conference Photos by Dorthe published 3 months ago


The conference took place in Nov. 2011 in Copenhagen. A summary report can be found here. 

Jesper Mogensen, Maria Marcus and Elsa Bencke

The audience

The audience

Ingerid – Euro-HSP treasurer – and Kari came from Norway

The audience

The audience

Jesper Mogensen, Maria Marcus and Elsa Bencke

Jesper Mogensen

A happy brain because of physical exercises

The chairperson of the conference, Palle Nielsen, and the vice-chair Dorthe Lykke taki...

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Patient groups

  • Danish HSP Assoc.

  • A.SL-HSP France

  • Spanish HSP Assoc.

  • Italian Assoc. for Living with SP

  • Holland Asoc. of Neuromusc. Disease

  • Spastic Paraplegia Foundation

  • UK HSP Group

  • NASPA Norway

  • Euro HSP

More information about these groups

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Hereditary Spastic Paraplegia Recent Activity

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    Looking to talk to people with mild hsp and share experiences
    topic, published 8 days ago

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    Hi as the title says im looking for people with mild hsp symptoms as it seems quite rare.

    in my case i have stiff legs and pes cavus feet which causes me the most problems even with orthotics . I work and have a normal life ,however on a night after work and on weekends i just want to rest. W...

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    Edema in feet
    topic, published 9 days ago

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    Does anybody have edema in their feet from HSP. The doctor has increased my lasix to 80mg and it doesn't seem to make a difference they checked my kidney function and that came back ok. My right foot is 3 times the size as the left. I fell 3 times in one day in mid January and injured my right an...

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    Botox
    topic, published 9 days ago

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    Email question, please help with the answer:

    My question is as follows: My 34 years old son has a complicated form of genetic spastic paraparesis, form 11, recessive, with axonal polineuropathy and sensibly ataxia.

    He gets the botulimic toxin injection in his legs every 3 or 4 months. I ha...

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    4 year old son with muscle weakness
    topic, published 11 days ago

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    My son has muscle weakness in his thigh and hip flexors as well as tight heel cords. We first noticed it when he first started walking at 16 months. He would fall all the time, and still will stumble a few times a day. He's had blood tests MRI's that show nothing. We've seen Dr's in NY and Boston...

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    Walkaid
    topic, published 12 days ago

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    My husbands HSP symptoms have increased greatly within the last five years. We are looking into the walkaid system but have found that it is not recommended for individuals who have had a seizure. I am looking for an individual who has the system even though they had in the past had a seizure. It...

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    5 Year Old Daughter Diagnosed with HSP
    topic, published 19 days ago

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    My 5 year old daughter was diagnosed within the last year with HSP. She has spasticity in her legs with weakness in her abdominal trunk and lower calf muscles. She started out not walking, then at 15 months walked with the assist of orthotics.

    She has always had pain in her lower extremiti...

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    Progression of disease
    topic, published 24 days ago

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    Hi my name is Bev, I live in Melbourne, Australia. I was diagnosed with HSP in 2005 and have so far been very lucky. I walk unaided but with a slight stiff legged gait, I do not need any aids. Since being diagnosed I don't seem to progrssed much, I take oral baclofen 40mg daily and that seems ...

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    abnormal muscle biopsy no slow myosin heavy chain
    topic, published 2 months ago

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    Until last week we thought my 4 year son might have HSP or MITO. His recent muscle biopsy came back last week. I sat with the genetecist today. After staining the muscle 3 times the pathologist has found... No slow myosin thick chain. They have never heard of or seen this before. They have seen ...

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    Physical Therapy in Hereditary Spastic Paraplegia (EN)
    document, published 3 months ago

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    Christina María Cop
    Physiotherapist. Neurological
    Physiotherapy.
    Centro Médico de Rehabilitación Monte Alto. Madrid. Spain.
    www.rehabilitacionmontealto.com
    sábado 12

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    La Paraparesi Spastiche Ereditarie (IT) HSP (EN)
    document, published 3 months ago

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    F.M. Santorelli 2011