Vårdrekommendationerna för spinal muskelatrofi (SMA)

Publikationen och information om sjukdomen. SMA I (Werdnig-Hoffmanns sjukdom), SMA II, SMA III (Kugelberg-Welanders sjukdom), SMA IV
Standard of Care in Spinal Muscular Atrophy” från 2018

Diagnosis and management of spinal muscular atrophy: Part 1 Recommendations for diagnosis, rehabilitation, orthopedic and nutritional care
Diagnosis and management of spinal muscular atrophy: Part 2: Pulmonary and acute care; medications, supplements and immunizations; other organ systems; and ethics

Boy with SMA Type 2 is running, standing , sitting, lifting alone under Spinraza

This is a miracle 💓 Boy with SMA Type 2 is running, standing and sitting, lifting alone. This is only possible with early treatment from birth with Spinraza. This is the new face from spinal muscular atrophy (SMA) 💪 #AdgangTilSpinrazaForAlle #AccessToSpinraza

Typical brothers playing. But can you believe one of them has SMA? Gabriel Peters was given the first FDA approved SMA treatment, Spinraza, while it was still in clinical trial three years ago. And this, friends, is a miracle. He is a miracle. The Peters family know this firsthand as their older daughter has SMA Type 2. Typically, the severity (or the type) is similar between siblings. But, with a treatment from birth, doctors now say Gabriel genetically has SMA but is asymptomatic — no type at all. Running, standing, lifting and throwing toys… all things not usually possible with this disease. This is SMA. The new SMA. And it is astounding! NEVER GIVE UP. www.NeverGiveUp.org#mynevergiveup #thisissma #miraclesdohappen #withalotofwork

Gepostet von Gwendolyn Strong Foundation am Mittwoch, 23. Mai 2018

Madeline mit SMA Typ 2 startet mit der Spinraza Therapie

Von dieser Stelle aus ein ❣ Glückwunsch an die liebe Madeline @MadelineSMArty. 🍀🍀🍀 Endlich hat sie einen Termin bekommen und startet mit ihrer Spinraza Therapie am 5.7.2018 in der Universitätsklinik Essen.

Hallo zusammen,ich habe heute die Termine von der #UniklinikEssen bekommen. Am 05.07.2018 bekomme ich die 1. Gabe…

Gepostet von Ich lass mich nicht behindern – Leben mit Spinaler Muskelatrophie am Mittwoch, 23. Mai 2018

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