THE EDITOR: In my last two submissions, I drew attention to the plight of MS patients who waited long periods before receiving a firm diagnosis, resulting in deterioration in condition because of lack of adequate drug treatment. I also presented a dramatisation of how the disease is invisible, and the attendant suffering which MS patients endure. Now I want to outline the role that the MS Foundation plays in support of MS patients.
An avenue for relevant information and education
The Foundation has contributed to, or participated in, relevant information sharing exercises. We held a session with scientists and researchers from one local company on stem cell methodologies for MS people through both invasive and non-invasive techniques. We were privileged as well, to be invited to a session conducted by world renowned MS scientists, Drs Soto and Garcia from Latin America, in the treatment solutions for MS patients particularly PPMS. Both of whom have provided treatment for this condition for patients internationally. These new drugs are not yet available locally, but are out of the cost reach of all of our members. (PPMS-Primary Progressive Multiple Sclerosis; RRMS-Rrlapsing Remitting Multiple Sclerosis)
Adequate and specific nutrition
We have studied videos by an international scientist and MS sufferer, Dr Terry Wahls and her colleagues on nutritional requirements of MS people, and have considered her plan as a pattern to adopt in our environment.
The concept of whole body care
In relation to this, we have noted that MS care must be related to addressing the totality of lifestyle factors, including rest, sleep, exercise, stress reduction, nutrition, psychological well being and spiritual well being, and have discussed this with our members.
Accss to adequate drugs
In TT, MS patients have been using a drug, Interferon, supported by government, which reduces the frequency of relapse and, therefore, also reduces the time to disability. Several newer drugs have been developed over time, of which two are are able to address PPMS clients and several others for RRMS clients. However, all drugs are out of the private financial reach of all of our members.
Access to specialist professional services
The MS Foundation has offered, free of charge, the services of physiotherapists, massage therapists, and occupational therapists to our members at in-house clinics in Port of Spain and San Fernando. This has been done through pro-bono or reduced charges for services. We need much assistance to continue to offer these services to our members to the extent to which they are needed.
The major focus points of the MSSFTT are information sharing, advocacy, patient service and, most importantly, access to reliable drugs. But we need support and assistance in carrying out these roles, as we look forward to the day when we can live normal lives, without invisibility.
Dr Daphne Phillips