Die Hereditäre Spastische Paraplegie (HSP) ist eine genetisch und klinisch heterogene Gruppe neurodegenerativer Erkrankungen mit progredienter Spastizität und Reflexsteigerung der Beine.

Unser Leben von tinalee publiziert vor 3 Monaten

Eine Reise durch die Liebe, das Leben mit all den Schwierigkeiten, die dazugehören Vor zwölf Jahren traf ich den Mann meiner Träume und verliebte mich sofort in ihn. Bei ihm war 20 Jahre zuvor HSP diagnostiziert worden. Das war mir von Anfang an egal, ich war verliebt und wusste, dass ich den Rest meines Lebens mit ihm verbringen wollte. Zwei Jahre später heirateten wir, und im Jahr darauf erbl...

Familien-Fehldiagnose von waddles1 publiziert vor 4 Monaten

Wir waren immer davon ausgegangen, unsere Mutter hätte MS, aber nachdem ihr HSP diagnostiziert wurde, fingen wir an, zu graben, und fanden heraus, dass ihr Vater eine "Querschnittslähmung" hatte. Meiner Schwester Pam wurde MS vor etwa 15 Jahren diagnostiziert. Die Annahme war, dass sie es, da unsere Mutter MS hatte, geerbt hatte. Unsere Mutter starb 1974 und hatte seit den frühen 1950...

“Quality of Life” Conference Photos von Dorthe publiziert vor 5 Monaten


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...

"Quality of Life" von Dorthe publiziert vor 5 Monaten


A summary from Euro-HSP on their “Quality of Life” Conference

Nov. 5, 2011
The first speaker was brain researcher, Prof. Jesper Mogensen. He pointed out that it is not the brain that gives quality of life to us but it is we who affect the brain. A neurotransmitter called dopamine is released in the front part of the brain with pleasure, and quality of life is affected by ...

My Son's Story von TinaGMc publiziert vor 6 Monaten

This is the story of my son Sam's diagnosis with Hereditary Spastic Paraplegia and our search for help and information. My son Sam was just diagnosed with HSP type 11. We live in northern California near San Francisco and are looking for information and support.

Sam is 19. His first symptoms appeared in April of this year. He developed problems with balance and began having difficulty walking. His MRI showed thinning of the corpus callosum that may have been present since birth. I kept searching for information based on the lan...

HSP-Treffen in Mailand von A.I.Vi.P.S. publiziert vor 7 Monaten


Am 12. November 2011 im Palazzo delle Stelline
"Erfahren Sie mehr über die Spastische Paraplegie und verbessern Sie Ihre Lebensqualität"

Wir erwarten ein außergewöhnliches Treffen, dessen Hauptanliegen im Titel der Veranstaltung bereits klar wird.

A.I. Vi.P.S. (Ein gemeinnütziger italienischer Verein für Patienten mit Spastischer Paraplegi...

Link to my FSP/HSP Blog von munkee publiziert vor 7 Monaten

I've been blogging about my journey towards FSP/HSP. This is primarily so I can note down things I find in one place and also to act as an aide memoir as I progress with the condition. I started blogging in June 2010 with the rough objective to post twice a month, which I've managed in all but one month so far.

The blog contains posts relating to things that I find out, and I try to include links where I find information.

Also, I note down my thoughts and the progression of my symptoms.

The link is: hspjourney.blog...

HSP Akupunktur Milano AIViPS Dr. Yerko Ivanovic Barbeito (IT) von AllieFreitas publiziert vor 7 Monaten

Bereitgestellt von HSP Italien (2011) Eine Präsentation von Dr. Ivanovic. Dieser Link führt Sie zu einer Präsentation, die Sie herunterladen können. Dies ist eine große Datei (40 MB). Diese Präsentation ist in italienischer Sprache.

www.mediafire.com/?m8bc89jppdqwj6q

Artikel und Berichte

Aktivitäten in der letzten Zeit in der Gemeinschaft Hereditäre Spastische Paraplegie

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    My Story
    topic, publiziert vor 16 Tage

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    Please read my story: Not only have I been inflicted by one rare disease, but TWO rare diseases. A story of hope and perseverance.
    http://www.gofundme.com/aliciahealy

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    Pennsylvania
    topic, publiziert vor 16 Tage

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    I am looking for people in Pennsylvania with HSP that I can talk to and see what they go thru with their HSP
    Thanks
    Sharon

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    Edema in feet
    topic, publiziert vor 28 Tage

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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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    Seizures
    topic, publiziert vor etwa 1 Monat

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    Does anyone have seizures related to their HSP?
    Be well
    Sharon

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    New type of HSP recorded in Australia
    topic, publiziert vor etwa 1 Monat

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    http://www.theleader.com.au/news/local/news/health/rare-disease-type-first-case-recorded/2493413.aspx

    The article mentions the Australian HSP Research Foundation, which I had not heard of before: http://www.hspersunite.org.au/

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    Looking to talk to people with mild hsp and share experiences
    topic, publiziert vor 2 Monaten

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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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    can you use baclofen if you have a physical job (electrician)
    topic, publiziert vor 2 Monaten

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    Hi as the title says does anyone know if you could use baclofen if you do a physical job as I've been prescribed the drug but have read it can effect your ability to balance and make you lightheaded. This obviously would be no good for me as I work from ladders and with live circuits, however the...

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    Botox
    topic, publiziert vor 2 Monaten

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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, publiziert vor 3 Monaten

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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, publiziert vor 3 Monaten

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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...