探訪香港及培訓 2011 Hong Kong Visit & Training 2011

（旅程由2011年3月15日至21日）

得到香港醫學會慈善基金的慈善捐助，脊髓肌肉萎縮症慈善基金安排及資助一位來自中國內地並很積極支持內地SMA家庭的SMA患者Martin來港參觀，以了解如何妥善照顧SMA的患者。以下是他行程後的感謝信：

尊敬的香港脊髓肌肉萎縮症慈善基金會會長霍陳美玲女士：

衷心感謝您的邀請，使我有機會於2011年3月15－17日對貴基金會進行訪問並接受SMA患者護理知識的指導和培訓。在貴基金會的精心安排下，本次訪問非常成功，無論是對患者的探訪，還是到物理治療中心（香港紅十字會甘迺迪中心物理治療部）、兒童醫院（根德公爵夫人兒童醫院呼吸中心）及醫療器械公司（尚健醫療器械公司）的參觀學習都極其富有成果。大大開闊了我的眼界，豐富了我在SMA患者護理及生命支持方面的知識。

進到這些患者的家中，我就好像進入了一個個小型的護理中心。我第一次有機會靠近那些可以支援SMA患者生命的器械，甚至親手觸摸它們，感受從其中輸送出的能拯救患者生命的氣流。原來我只能通過網路上的文字或圖片來瞭解如何借助BiPAP呼吸機、CoughAssist咳痰機、氣管切開術、胃造口術等方式來護理支援重症SMA患者，但現在所有這些器械的工作狀況就呈現在我面前。在尚健醫療器械公司，銷售經理馬先生更是進一步為我展示了各種最新款的輔助SMA患者器械的特性，以及如何調整它們不同的模式或參數才能滿足不同SMA患者的個體需要。若不借助實物進行講解，我知道自己根本無法建立正確明晰的相關理念。

(Journey from 15 March 2011 –21 March 2011)

With the kind donation from Hong Kong Medical Association Charitable Trust, Families of SMA Charitable Trust arranged and sponsored Mr.Martin Ma, a SMA patient in China who is actively supporting other SMA families around China, to visit Hong Kong and learn how SMA patients should be taken care of. The following is his thank you letter after the trip:

Honorable President of Families of SMA Charitable Trust Mrs. Mei Ling Fok:

I'm very grateful for your kind invitation, which gave me the opportunity to visit your organization and receive the training in SMA patient management. Your carefully-made plan and arrangement has made my visit to the patients' home, PT center (Physiotherapy Department of John F. Kennedy Centre, Special School in Hong Kong), children hospital (Ventilation Centre in Duchess of Kent Children Hospital) and medical equipment company (Celki Medical Company) very successful and fruitful. The experience has greatly opened my eyes and enormously enriched my knowledge and understanding on SMA patient caring and their life support.

Once I got into the patients' homes, I seemed to be in the small ICUs. For the first time the life-supporting machines were so close to me. I could even reach out to touch them and feel the air flow that is delivered to help patients breathe better and sometimes save their lives. Back in mainland, all that I can do is browse through Internet pages and gain the vague ideas of BiPAP, CoughtAssist, tracheotomy, gastrostomy, etc. But here I saw clearly how the machines and medical treatment work positively on the patients and make their life different. What's more, in Celki Medical Company sales manager Mr. Enoch Ma further explained to me how to choose right models or parameters on these machines to meet each patient's specific need. But for such on-the-spot demonstration, I know I would never have been able to establish such clear and concrete ideas on these up-to-date equipments and accessories.

---

雖然目前世界範圍內對於SMA尚無有效的治療手段，但恰當的護理及支持方法已經證明可以有效地保護SMA患者現有的身體運動功能、提高他們的生存品質並延長他們的生存時間。但目前內地許多醫生，甚至來自北京、上海等大城市的，對於SMA的瞭解都還極為有限，對於病情較重的SMA患者更是無法提供具有實際意義的護理指導和幫助。因此許多家長在得到孩子患有SMA的診斷之後只能是無助地把他們帶回家中任由病程自由發展。回家後，孩子在最需要獲得?明的呼吸和餵養方面往往都得不到正確的指導和幫助，不是由於被食物或水嗆到呼吸困難危及生命就是由於感冒引起肺部感染而不得不入院治療。許多孩子的生活就是在這樣反復的入院出院中度過，家人為此也是如履薄冰疲于應付。隨著時間的推移，這些孩子的呼吸功能都變得越來越虛弱，但由於無法獲得有效的護理支持，最後大都因為呼吸衰竭而過早地離開了人世。

可當我這次來到香港親眼看到這裡SMA患兒的生活狀況時，我確實相信了，通過恰當和充分的護理，這些孩子的生活品質是可以大大提高的。無法自主呼吸或進食的患兒有了BiPAP呼吸機的支援或接受了胃造口術後就可以回到家中和家人一起享受更多寶貴的家庭時光甚至重返校園，這在內地目前是完全無法想像的。類似的孩子在內地還只能是被禁錮在醫院的特護病房中，經鼻插管幫助呼吸和餵食。而這對於孩子的身體和家長的精神都會造成巨大的傷害。

Although there is still no cure or treatment to SMA around the world now, appropriate management and support have been proved effective in protecting SMA patient's existent motor function, improving their life quality and increasing their life-span. In mainland China, however, many doctors even don't know too much about SMA, including those in big cities such as Beijing and Shanghai. They can give little practical suggestion or help to the families who get the diagnosis of SMA. Many parents can only take the sick children home and let the disease take its natural course. Without professional guide and intervention in breathing and feeding, the children are more subject to choking and breathing problems. Pulmonary infections often bring these children back to ICU or take their young lives away untimely. Life is just like skating on thin ice every day to these helpless parents.

But when I came to Hong Kong and saw the SMA patients living at home, I do believe that appropriate care and management can help improve their life quality significantly. With BiPAP machine or gastrostomy, the children who have difficulty breathing or feeding on their own can be discharged from hospital to enjoy valuable family time with their parents and even go back to school. All these are absolutely unimaginable in mainland now. Their counterparts can only be confined in ICU depending on breathing and feeding tube inserted through their nose to sustain their life. This causes a lot of pain on the patients' body and their parents' spirit.

---

對於症狀稍輕一些的SMA患兒，專業的物理治療在內地也很缺乏。很多孩子由於沒有及時獲得有經驗的治療師的幫助和建議而過早出現了脊柱側彎、關節攣縮變形等問題，喪失了本可以保持的一些運動功能。有些家長由於心情急迫甚至強迫孩子進行超過其承受能力的鍛煉而對孩子的身體造成不必要的傷害。但在香港我看到的是，依據孩子身體的情況專業的治療師不但會上門為孩子進行治療也會指導孩子家長如何正確地為孩子進行物理治療。這樣在治療師和家長的共同努力下孩子可以安全地獲得最大可能的身體功能改善。

來港之前，內地一位已經出現脊柱側彎的2型SMA患者托我向香港專業的醫生諮詢如何才能防止脊柱進一步側彎以及如何才能減緩她背部的疼痛。當我參觀香港紅十字會甘迺迪中心時，負責接待的楊醫生耐心地為我們進行了解釋和示範，恰當的座位系統和適時地調整坐姿就可以有效地緩解困擾這位SMA患者的問題。此外諸多內地患者曾經諮詢過我但我無法解答的問題在這次到港訪問學習之後我都得到了專業的答案。

Mainland now is also short of physiotherapists who are experienced with SMA patients. Due to lack of professional PT support, some children untimely develop scoliosis or joint contracture and lose the motor function which could have been maintained. Also without proper guide, some parents even force the children to exercise beyond their limit, which in turn cause some obvious or potential harm to their young bodies. But the situation is quite different in Hong Kong. Physiotherapists would not only treat SMA children according to their personal condition but also show their caregivers how to do the common PT correctly. Working together with professional therapist, parents can expect to help their child gain the most possible physical and psychological benefit.

Before I came to Hong Kong, a type 2 patient with scoliosis asked me what she could do to ease her back pain and slow down the curve. When I visited John F. Kennedy Center with the question, I got the professional answer from Mr. Tony Yeung who carefully explained and demonstrated to me that appropriate seating system and position adjustment is the key to dealing with this problem. This is just one of the examples that I cannot help mainland patients with my limited knowledge but found the answers during my visit and training in Hong Kong.

---

短短幾天當中，我經歷了內地和香港在SMA患者護理支持理念及實際操作方面的巨大差異，這也更堅定了我幫助內地SMA家庭積極正確面對這可怕疾病的的決心。借助我們新開通的網站（www.fsmachina.org）,我將把此次在港學習到的寶貴理念和護理經驗介紹給內地的患者，幫助他們減輕SMA所帶來的痛苦提高患者的生活品質。此外，借鑒香港FSMA基金會的成功運作經驗，我們將會通過戶外聚會等活動拉近患者家庭間的距離，同時也提高整個社會對SMA的認知度，鼓勵更多愛心人士來關心和幫助這個特殊群體。

目前，北京武警總院正在與美國斯坦福大學兒童神經病科專家汪慶博士合作開展一項針對SMA的藥物臨床試驗。我們已經組織?明全國各地超過50個家庭成功預約了此次試驗前汪教授親自進行的排診。在這期間，我們也與此次試驗的中方負責人神經內科專家吳醫生建立起了良好的互動關係。看到香港眾多SMA家庭在貴基金會的關心下獲得許多實際的幫助，我認為這將會是我們在內地值得借鑒的一種模式。我將聯合有意長期致力於幫助國內SMA患者的家長以及像吳醫生這樣的專業人士一起來籌畫建立我們自己的基金會。讓社會聽到更多來自我們這個群體的聲音，為國內SMA患者爭取更多他們應得的關注與支持。

最後，代表我的父母，我還要特別感謝霍太贈送給我的電動輪椅。這不但大大減輕了他們照顧我的負擔，也讓我在家中及外出的時候都獲得了更多的自由和獨立性。

Deeply shocked by the big difference in the concept and practice of SMA patient management between mainland and Hong Kong, I'm determined to make the best use of what I've learned in Hong Kong to help SMA families in mainland face the devastating disease correctly and positively. Through our newly launched website (www.fsmachina.org), I'll share with them the ideas and choices that can help them better relieve the child's suffering, protect their motor function and improve their life quality. Also we will promote the families' communication and strive to raise public awareness of the disease through outdoor activities of our patients, encouraging more caring persons to concern and help this special group.

Working together with Prof. Ching Wang, a pediatric neurologist from Stanford University, the Armed Police General Hospital in Beijing will soon conduct a clinical trial on a potential drug for SMA. We (two caring mothers of SMA patients and I) have helped over 50 families around mainland China make the appointment with Prof. Wang to take his eligibility exam. Through the contact with the hospital, we have developed a good relationship with Dr. Wu, the Chinese leader of this clinical trial. We will seek more support from professionals like Dr. Wu not only for medical advice on our patients but also for assistance in setting up our own organization devoted to helping SMA families in mainland. We know only through more group activities can we make our voice heard by society and government, and claim more attention and help for the deserving families.

Finally on behalf of my parents I want to thank Mrs. Fok again for donating the fabulous power wheelchair to me. It gives me much more independence and mobility and greatly ease my parents' burden when I need to get around at home or go outside.

---

感謝霍太、嚴太、Carmen、Edward讓我擁有了這次難忘的訪港之旅！

馬斌 2011.3.30

Thank you Mrs. Fok, Mrs. Yim, Carmen and Edward for making my visit in Hong Kong such a meaningful and unforgettable experience!

Martin 2011.4.10