Paraplegia spastica familiare comunità

Le paraplegie spastiche familiari (PSF) comprendono un gruppo clinicamente e geneticamente eterogeneo di malattie neurodegenerative, caratterizzate da progressiva spasticità e iperreflessia agli arti inferiori.

DIFFERENT, NOT UNABLE da rdc-team pubblicato 9 giorni fa

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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La nostra vita La nostra vita La nostra vita da tinalee pubblicato 3 mesi fa

Un viaggio di vita amorosa e tutti i suoi dettagli confusi 12 anni fa ho incontrato l'uomo dei miei sogni e mi sono subito innamorata. Gli era stata diagnosticata la HSP 20 anni prima. La cosa non è mai stata veramente rilevante per me; ero innamorata e sapevo che avrei passato il resto della mia vita con lui. Ci siamo sposati due anni più tardi e l'anno successivo abbiamo dato il ben...

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Errore di diagnosi familiare da waddles1 pubblicato 4 mesi fa

Ho sempre pensato che nostra madre avesse la MS ma dopo essere stata diagnosticata con la PSF ho fatto alcune ricerche e scoperto che suo padre era affetto da 'paraplegia.'
Mia sorella, Pam, ha avuto la diagnosi di MS circa 15 anni fa. Siccome nostra madre ne era affetta, la convinzione era che l'avesse ereditata da lei. Nostra madre è morta nel 1974 e i primi sintomi erano comp...

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“Quality of Life” Conference Photos da Dorthe pubblicato 5 mesi fa


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" da Dorthe pubblicato 6 mesi fa


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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La storia di mio figlio da TinaGMc pubblicato 6 mesi fa

Questa è la storia della diagnosi di Paraplegia Spastica Ereditaria di mio figlio Sam e della nostra ricerca di aiuto e informazioni. A mio figlio Sam è appena stata diagnosticata la HSP di tipo 11. Noi viviamo nel nord della California vicino San Francisco e stiamo cercando informazioni e supporto.

Sam ha 19 anni. I suoi primi sintomi sono apparsi ad aprile di quest'anno. Ha cominciato ad avere problemi di equilibrio e difficoltà a camminare. La sua risonanza magnetica ha mostrato un assottigliamento del corpo calloso che poteva es...

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Primo Convegno A.I.Vi.P.S Onlus a Milano da A.I.Vi.P.S. pubblicato 7 mesi fa


12 novembre 2011 Palazzo delle Stelline
“Conoscere le Paraparesi Spastiche per Viverle al Meglio“

Un appuntamento molto importante che già nel titolo illustra con chiarezza gli obiettivi fondanti dell’Associazione.

A.I. Vi.P.S. (Associazione Italiana Vivere la Paraparesi Spastica Onlus) nasce nell’ottobre 2009 presso la sede di Telethon a Roma, grazi...

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Link to my FSP/HSP Blog da munkee pubblicato 7 mesi fa

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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Paraplegia spastica familiare Attività Recenti

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    My Story
    topic, pubblicato 21 giorni fa

    mostra tracrizione

    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, pubblicato 21 giorni fa

    mostra tracrizione

    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, pubblicato circa 1 mese fa

    mostra tracrizione

    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, pubblicato circa 1 mese fa

    mostra tracrizione

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

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    New type of HSP recorded in Australia
    topic, pubblicato 2 mesi fa

    mostra tracrizione

    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, pubblicato 2 mesi fa

    mostra tracrizione

    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, pubblicato 2 mesi fa

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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, pubblicato 3 mesi fa

    mostra tracrizione

    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, pubblicato 3 mesi fa

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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, pubblicato 3 mesi fa

    mostra tracrizione

    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...