Communauté Paraplégie spastique familiale

Les paraplégies spastiques familiales (PSF) représentent un groupe hétérogène sur le plan génétique et clinique de maladies neurodégénératives caractérisées par une spasticité progressive et une hyperréfléxie des membres inférieurs.

DIFFERENT, NOT UNABLE par rdc-team publié il y a 9 jours

Overcoming challenges
Author: Loreto Román It was from a short text that I proceeded to write about my position in life with a rare an chronic desease, HSP. Alteria Editorial (www.altariaeditorial.com) asked me for a book which might reflect how even in that situation one could have the enthusiam of living, having objectives, challenges, the desire to live, and many satisfactions from life. This was the way the book was created: www.altariaeditorial.com/docs_books/%20132...

The way I speak about my like begi...

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Notre vie par tinalee publié il y a 3 mois

Un voyage sur le chemin de l'amour et tous ses détails compliqués. Il y a 12 ans j'ai rencontré l'amour de ma vie et je suis tombé amoureuse de suite. Il avait été diagnostiqué avec HSP 20 ans plus tôt. Ca n'a jamais vraiment compté pour moi, j'étais amoureuse et je savais que je passerais le reste de ma vie avec lui. Nous nous sommes mariés deux ans plus tard, et l...

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Diagnostic familial erroné par waddles1 publié il y a 4 mois

Nous avions toujours supposé que notre mère était atteinte de la SEP, mais après qu'elle eu été diagnostiquée avec le HSP, nous avons fait quelques recherches et découvert que son père avait une « paraplégie ».
Ma sœur, Pam a été diagnostiquée avec une SEP il y a environ 15 ans. L'hypothèse était que notre mère ayant eu elle même une SEP, ma sœur en avait hérité. Notre mère est mort...

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“Quality of Life” Conference Photos par Dorthe publié il y a 5 mois


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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"Quality of Life" par Dorthe publié il y a 6 mois


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 ...

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My Son's Story par TinaGMc publié il y a 6 mois

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...

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Réunion PSF à Milan par A.I.Vi.P.S. publié il y a 7 mois


12 novembre 2011 Palazzo delle Stelline
"En savoir plus sur la Paraplégie spastique familiale pour améliorer votre qualité de vie"

Une rencontre vraiment exceptionnelle se déroulera, dont le titre met clairement en évidence les principaux objectifs de l'Association.

A.I. Vi.P.S. (une association italienne à but non lucratif ...

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Link to my FSP/HSP Blog par munkee publié il y a 7 mois

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...

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Filtres

Activité récente dans la communauté Paraplégie spastique familiale

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    My Story
    topic, publié il y a 21 jours

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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, publié il y a 21 jours

    Voir la transcription

    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, publié il y a environ 1 mois

    Voir la transcription

    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, publié il y a environ 1 mois

    Voir la transcription

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

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    New type of HSP recorded in Australia
    topic, publié il y a 2 mois

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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, publié il y a 2 mois

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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, publié il y a 2 mois

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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, publié il y a 3 mois

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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, publié il y a 3 mois

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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, publié il y a 3 mois

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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...