關於 progressive spinal muscular atrophy ，我們在網路上蒐集到這些相關的討論、資訊與評價

I hope this post gets as many eyes on this as possible - please take a few minutes to read if you can.

Devdan is born with Type 2 Spinal Muscular Atrophy (SMA) – a rare condition that damages nerve cells in the brain and spinal cord. This leads to progressive muscular weakness and trouble with activities such as breathing, speaking, swallowing, and walking.

Zolgensma, is a ONE-TIME-ONLY gene therapy treatment for children aged under 2 years with SMA which costs $2.8 MILLION.

Devdan turns 2 in Oct so this is a race against time to raise this money before FDA will send this drug out. I myself have donated, and so far we have clocked over $1 million which is fantastic but we still have yet to reach our goal. Appreciate it if you can spare a donation - no amount is too small. 🙏🏼

Stay strong Devdan, always remember God is fighting with and for you. ❤️

DONATE HERE: https://rayofhope.sg/campaign/please-give-devdan-a-second-chance-of-life/

【資訊分享】~ 肌肉萎縮症攝影比賽

最近因為過年前，所以臨場服務卡滿幾乎每一個沒看診的空檔時段，粉專也一陣子沒有新文章了。前兩天，收到肌萎症病友協會希望轉發他們的活動，也忙到現在才發。

大家一定會問到，「肌肉萎縮症」和之前在社群軟體為了『漸凍人』而瘋傳的『冰桶挑戰』（Ice Bucket Challenge），又有什麼不同？

這個白話一點來說呢，「肌肉萎縮症」是很多疾病的集合，只要最後會造成肌肉萎縮的現象，都可以廣義稱為「肌肉萎縮症」；而『漸凍人』，則是指好發於成人的『肌萎縮性脊髓側索硬化症』（ALS）。

會造成肌肉萎縮，常見的有兩個機轉：

1. 肌肉失養：(沒能量就萎縮)

如：
杜顯氏肌肉失養症(Duchenne muscular dystrophy)
貝克氏肌肉失養症(Becker muscular dystrophy)
肢帶型肌肉失養症(Limb-girdle muscular dystrophy)

2. 神經元疾病：(沒刺激就萎縮)

如：
脊髓性肌肉萎縮症(Spinal muscular atrophy)
肌萎縮性脊髓側索硬化症(Amyotrophic lateral sclerosis)原發性脊髓側索硬化症(Primary lateral sclerosis)
漸進性肌肉萎縮症(Progressive muscular atrophy)
甘迺迪氏症(Kennedy Disease)

---- 好像扯太遠了，快點拉回來 ----

大家最近除了回家投票以外，也可以關心一下這個活動；他們後來還會辦攝影展唷。

最後，肌肉萎縮症不是傳染性疾病，而是因為基因的缺損造成 (可能因為遺傳，也有些出自突變)；所以當下次看到肌萎症的病友，不用擔心傳染給自己而退避三舍唷。

#肌肉萎縮症
#中華民國肌萎縮症病友協會
#肌萎不設限_關懷每一天
#一同為肌萎縮症病友喝采