DNA Spinal Muscular Atrophy

Living with Spinal Muscular Atrophy (SMA) – Life Perspectives

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Don’t mince our words : living with spinal muscular atrophy (SMA) is not an easy journey ! I will not fall into miserability here but i will try to “clarify the ground and the perspectives” of those who would consult this article. If you are here, it is probably because you are close to someone who has been diagnosed with this condition and you have questions. This is legitimate and as I have myself a type 1 spinal muscular amyotrophy (also known as Werdnig–Hoffmann disease), I am well placed to answer your deep questions !

N’y allons pas par quatre chemins, vivre avec une amyotrophie spinale n’est pas un parcours de tout repos ! Je ne vais pas verser dans le misérabilisme ici mais tenter « d’éclaircir le terrain et les perspectives » de celles et ceux qui consulteraient cet article. Si vous êtes ici, c’est probablement que vous êtes un proche d’une personne qui a été diagnostiquée avec cette maladie et vous vous posez des questions. C’est légitime et comme je suis moi-même atteint d’une amyotrophie spinale de type 1b (dit aussi type 1 bis), je suis assez bien placé pour répondre à vos interrogations profondes !

Living with Spinal Muscular Atrophy : Health

A woman with Spinal Muscular Atrophy is taking care of her health

Living with spinal muscular atrophy requires effort and constant attention, especially in terms of health ! Even if we now benefit from better medical care, it is crucial to pay close attention to fatigue, respiratory diseases, to have a healthy lifestyle with a very regular rhythm, to maintain the best possible bones, muscles and joints shape with frequent mobilizations, to have a stable diet but sufficiently rich to be able to have energy during the day. Take inspiration from the lives of athletes, this is one of the best advice I can give you for a calm and serene life.

Vivre avec une amyotrophie spinale demande des efforts et une attention de tous les instants surtout au niveau de la santé ! Même si nous bénéficions maintenant de meilleurs soins et que les parcours de santé sont bien balisés, il est crucial de faire très attention à sa fatigue, aux maladies respiratoires, à avoir une bonne hygiène de vie par un rythme très régulier, à maintenir la meilleure forme osseuse, musculaire et articulaire possible via des mobilisations fréquentes, à avoir un régime alimentaire stable mais suffisamment riche pour pouvoir avoir de l’énergie en journée. Inspirez-vous de la vie des athlètes, c’est un des meilleurs conseils que je peux vous donner pour une vie calme et sereine.

Entertainment, Culture and Travel

Living with Spinal Muscular Atrophy (SMA) - Life Perspectives

Yes, it’s possible to have a life filled with entertainment, culture and travel ! The accessibility of public places is a concept that goes deep into our societies even if everything it is not perfect and some places will remain inaccessible, things are improving quite quickly. This makes more and more possible to plan great tourism visits !

In terms of digital entertainment, now we can take advantage of the latest technologies in digital accessibility. Today, being an active player is becoming a reality. When I say that, I’m talking about playing with almost no limitation due to physical disabilities. Look around you, on our site, this is what we are developing here at Give Access !

Studies and Professional Life

Living with Spinal Muscular Atrophy (SMA) - Life Perspectives

Studying in good conditions is now easy. Of course, there will be a need for logistical and organizational adaptations. Get a good education and a graduation is now a milestone to access to great career opportunities !

It will be quite possible to orientate toward employees works or even to entrepreneurship which is a very interesting path for us (I am talking about it knowingly since I have been an entrepreneur for several years). However, be vigilant because the professional paths for us are a little bit more atypical. This is a subject that I discuss very often when I do some coaching sessions with my “colleagues” with disabilities.

Love Relationship and Family Life

DNA Spinal Muscular Atrophy

Love relationships are still a difficult subject and somewhat taboo. Some of us are well established as a couple and sometimes with children. Yes ! The sexuality of people with disabilities exists and is possible. Spinal muscular atrophy therefore does not limit in any way love life. The same goes for family life even if this aspect is more delicate from a medical and societal point of view.

As you can see, living with spinal muscular atrophy is a different life, but just as beautiful and rich in meetings, discoveries, experiences and projects ! So never give up and live your life !

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