About
Origin
– 本會成立於 2019 年，為亞洲大學附屬醫院林志隆副院長、心臟血管外科劉殷佐主任、骨科王大翊主任及全國數百位各專科醫師十幾年來，醫治脊髓相關神經病變患者的經驗，感受到患者在生理心理及長期照顧各方面，在目前的醫療環境及社會救助上仍有不足的地方，需要有專門機構整合醫療專業的標準治療流程，及社會資源長期照顧與支助，特地成立此關懷協會來有效醫治脊髓神經病變的患者，讓他們在每天蒙受疾病的煎熬下能得到社會及人道的關懷，進而使他們的人生及生命有不一樣的未來及信心。
Unveiling Ceremony
Love and Spine Neuropathology Care Association held unveiling ceremony in 2020. Many patients showed up to express their gratitude towards Dr. Lin. Because syringomyelia is a rare disease, a lot of patients do not receive proper care in the beginning, they miss golden hour of treatment.
Therefore, they have to stay with illness for the rest of their life. In addition, a lot of families cannot afford tons of medical expenses, Love and Spine Neuropathology Care Association hopes to help the
underprivileged patients to get better medical treatment through donation.
To draw the public’s attention to syringomyelia, Love and Spine Neuropathology Care Association holds a lot of activities to make people realize the early signs of syringomyelia so that they can receive early detection and treatment.
About Us
- To build up a platform for patients of syringomyelia. They can share their condition and the treatments they received with each other.
- To strive for getting the permission of specific medicine and IC card for severe illness by becoming a statutory authority.
- To invite sponsors to help patients with syringomyelia and neuropathy to receive surgery and implant microchip that provides pain relief.
- To hold conference regularly with medical specialists worldwide to create up-to-date surgery method and treatment standard.
- To hold offline and online patient meetings to keep them posted on latest treatments and resources available.
- To help patients develop their potential and create their own value by the association and the power of internet.
- To help patients develop their potential and create their own value by the association and the power of internet.
Introduction of Syringomyelia
Syringomyelia can be divided into congenital and acquired causes. The reason of congenital causes is because during embryonic development, defects in the mesoderm create a narrowing of the posterior fossa space. Acquired causes often result from trauma, inflammation, tumors, degenerative caused by disease.
Syringomyelia often affects neck, chest and spine. It usually develops slowly over time, which makes patients hard to detect early symptoms. Therefore, they do not receive medical checkup until they notice muscle weakness and wasting. Since syringomyelia is a rare disease and is hard to diagnose, patients often miss the golden hour of treatment and leave permanent neuropathy.
Because syringomyelia is not able to prevent, the best way to prevent from getting it is by early detection and treatment. Through Love and Spine Neuropathology Care Association, we hope to educate the public about the disease and combine social resources to help these patients to receive best treatment.
-Symptoms
Signs and symptoms of syringomyelia, which might affect your back, shoulders, arms or legs, can include: pain in limbs, stiffness in your back, shoulders, arms and legs, loss of sensitivity to pain and temperature, difficult to move, and incontinence of urine and feces.
-Incidence Rate
2.2 in every 100,000 people in the world. In Taiwan, there are approximately 500+ patients.
-Treatments
Treatment for syringomyelia depends on the severity and progression of your signs and symptoms. Until nowadays, surgery is the best way to treat syringomyelia. Congenital syringomyelia can use decompression of the posterior cranial fossa, and acquired syringomyelia requires extensive
decontamination of the nerves to restore normal cerebrospinal fluid circulation and reduce the compression of the spinal cord caused by the syringomyelia.
-Follow-up care
It depends on the length of time and the degree of nerve damage. Generally speaking, only sensory nerve damage has a better prognosis. If motor and autonomic nerve damage has been caused, the prognosis is poor.
2019/6 成立愛相髓脊椎神經病變關懷協會
2019/12 歲末感恩音樂會
2020/7 志工營
2020/10 揭牌儀式
2020/10 醫學營
2021/1 歲末感恩回顧暨音樂彩繪饗宴
2021/3 生命彩繪展
2021/12 脊髓空洞病友會
2022/1 年終義賣
2022/3【愛的骨力】愛相髓健康日
2022/4 國際外科學會醫學教育營
2022/7 脊髓空洞症線上病友會
2022/8【愛的骨力】愛相髓健康日
2022/10 年中義賣
2022/12【華燈初Sound】愛相髓慈善音樂會
Welcome to Contact Us
Add:
No. 16, Xinyi Rd., Wufeng Dist., Taichung City 413, Taiwan
Tel:
+886-4-3706-1668 ext.1028
Office hours:
Monday-Friday 9:00 am - 5:00 pm