The founder of the MS Association of Kenya demonstrated the importance of international collaboration recently with an unprecedented visit to the National MS Society in the US.
Laura Musambayi, who founded MS Kenya in 2011, met with staff at various chapters of the US organisation from June to September to study the organisation’s approach and develop solutions to improve MS Kenya’s services.
Since its inception, MS Kenya has evolved from a support group into a registered society supporting people with MS and Neuromyelitis Optica (NMO), as well as their families.
Read Laura’s account of her unique visit.
‘Over time, as the number of people living with MS and NMO has grown, our society has begun to face new challenges. I felt that addressing these challenges would better equip members of the society to live positively with their MS.
In visiting the Upper Midwest and Greater Delaware chapters of the National MS Society, I was keen to learn about effective methods of running a growing patient support group, ways to help members to better advocate for themselves in every sphere of their lives, and guidance on developing and managing effective partnerships that support national advocacy and research.
As a healthcare provider and a person living with MS, I was impressed by the resources available for MS patients, their families and employers in the US. Whilst care for MS patients in Kenya is primarily the preserve of the neurologists, MS care in the US embraces a multidisciplinary and multi-sectoral approach. This model meets both the direct healthcare needs and social determinants of health – for example, affordable housing modifications, the provision of assistive mobility devices and even the option to live in wheelchair communities, such as Inglis House in Philadephia.
Many MS patients in Kenya lack access to information and resources on the clinical management of MS and how to live positively with MS. In order to solve this problem, our friends at NMSS Greater Delaware Valley offered to send some informative pamphlets to Kenya. They have also allowed us to share links to NMSS’ resources on the MS Kenya website, so that such information is readily available to patients, families and healthcare providers. We also hope to invite neurologist Professor Thomas Leist to visit Kenya and present lectures on best practice in MS care and research in low resource contexts.
I also attended a special conference in Baltimore, where I had the opportunity to interact with nurses, social workers, neurologists and researchers from MS Centers of excellence. We discussed the strides made so far in MS care in both countries, current challenges and potential areas for improvement of MS care.
Following this exposure, I am motivated to find a way that MS Kenya can partner with healthcare providers and other stakeholders in the health sector, not only to advocate for more comprehensive care for people with MS but also to increase MS research in Kenya. My understanding of the phrase, “we are stronger together” has taken on a new meaning; the MS community is better off when healthcare providers come together with support groups and MS Societies reach beyond the walls defined by their borders to encourage and support each other.’