الضمور العضلي نخاعي المنشأ | معًا في مواجهة الضمور العضلي نخاعي المنشأ

لماذا

يختلف ضمور العضلات الشوكي بين حالة وأخرى؟

تختلف تأثيرات مرض ضمور العضلات الشوكي بين شخص و آخر .كما يختلف العمر عند الإصابة و تتعدد أعراض و خصائص المرض بحسب كل حالة على حدة.¹

ضمور العضلات الشوكي عند الرُّضّع والأطفال

ضمور العضلات الشوكي عند البالغين

الصور المعروضة تعود لمرضى حقيقيين وقد زودونا بالموافقة المطلوبة لاستخدام قصصهم من المرضى وأسرهم. الصور هي لأغراض توضيحية فقط.

Red flags

If your child has missed some developmental milestones, there are some ‘red flags’ you can look out for.^3-5

ADULTS WITH SMA

In recent years there has been many improvements in the quality of care and management of SMA in adult patients.^6,7

Zac’s play day

Meet Zac, Ziggy, Oliver, Ping and other fun characters in this children’s story of young Zac and how he lives with SMA.

About Together in SMA

At Biogen, we are committed to supporting those with spinal muscular atrophy and their care team. Our hope for Together in SMA is that, by providing information, we can help you to get the most up-to-date care, and to help guide conversations with your doctors.

Here you'll find information about spinal muscular atrophy and its symptoms, insights into care options, and perspectives from people living with SMA, experienced caregivers and healthcare professionals on topics ranging from nutrition to adaptive equipment.

With Together in SMA, we hope:

To provide meaningful insights into the care of individuals with spinal muscular atrophy.

To help guide conversations with your physician.

To help you understand the current clinical guidelines and available options of care.

To provide meaningful insights into the care of individuals with spinal muscular atrophy.

To help guide conversations with your physician.

To help you understand the current clinical guidelines and available options of care.

The people featured on this website are part of Together in SMA, which is sponsored by Biogen. Biogen compensates these contributors for their time and the content they provide.

Consulting with your doctor will help to develop a care plan that works best for you and your family.

We value the feedback and involvement of the SMA community as our understanding of the disease advances. We’ll be updating this site regularly with insights from healthcare professionals and new content from caregivers like you—because we are always Together in SMA.

References

1. Kolb SJ, Kissel JT. Spinal muscular atrophy. Arch Neurol. 2011;68(8):979-984.

2. Lunn MR, Wang CH. Spinal muscular atrophy. Lancet 2008;371(9630):2120-2133.

3. Prior TW, Russman BS. Spinal muscular atrophy. NCBI Bookshelf Web site. https://www.ncbi.nlm.nih.gov/books/NBK1352/?report=printable. Updated November 14, 2013. Accessed August 20, 2019.

4. Wang CH, Finkel RS, Bertini ES, et al; and Participants of the International Conference on SMA Standard of Care. Consensus ; statement for standard of care in spinal muscular atrophy. J Child Neurol. 2007;22(8):1027-1049.

5. Markowitz JA, Singh P, Darras BT. Spinal muscular atrophy: a clinical and research update. Pediatr Neurol. 2012;46(1):1-12.

6. Mercuri E, et al. Diagnosis and management of spinal muscular atrophy: Part 1: Recommendations for diagnosis, rehabilitation, orthopedic and nutritional care. Neuromuscul Disord 2018;28(2):103-115.

7. Finkel R, et al. Diagnosis and management of spinal muscular atrophy: Part 2: Pulmonary and acute care; medications, supplements and immunizations; other organ systems; and ethics. Neuromuscul Disord 2018;28(3):197-207.