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Saturday 21 September 2019
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Outreach for an orphan disease

awareness for multiple sclerosis

Patricia Jaggasar-Clement, secretary of the Multiple Sclerosis Support Foundation, has a vision for a patient care centre. PHOTOS BY VIDYA THURAB
Patricia Jaggasar-Clement, secretary of the Multiple Sclerosis Support Foundation, has a vision for a patient care centre. PHOTOS BY VIDYA THURAB

JENSEN LA VENDE concludes his series on multiple sclerosis, and the people who are living their best lives in spite of the disease.

“IF I can help somebody as I pass along, then my living shall not be in vain,” written and sung by Alma Irene Bazele Androzzo-Thompson has been personalised by Patricia Jaggasar-Clement, secretary of the Multiple Sclerosis Support Foundation (MSFF).

Jaggasar-Clement sat down with Sunday Newsday at a pizzeria last week and opened up about why she joined the organisation.

A sociology PhD student and mother of two, she lamented that multiple sclerosis is an orphan disease and the support for those suffering with the condition is limited, so she welcomed the opportunity to join the MSSF. The group, which has five directors presently and is only two years old, was founded by Dr Daphne Philips, a MS patient and former member of parliament.

“It was an opportunity to serve in an area where there isn’t much support. There are many conditions that are well known, such as cancer and diabetes and there is a lot of funding and support. MS is hardly known, it is called an orphan disease because there isn’t a great network of support around it. Recently there has been an upsurge in MS and funding internationally and there has been an increase in research projects to treat MS.”

Jaggasar-Clement's quality of life has been enhanced working for the foundation and she has brought her children on board as well to be part of the community of support for those with MS.

Directors , she observed, were accustomed to dipping into their own pockets to foot various bills, which included but was not limited to physical therapy for patients, and so she made arrangements for the foundation to secure a bank account for its funds.

Her vision is for a centre to provide care for patients.

Patricia Jaggasar-Clement encourages her daughter and relatives to support the MS cause.

“I will like to see a centre of excellence for MS in TT. It will have a dedicated nurse, neurologist, MRI machines and different ancillary systems like blood testing that can be done there so that patients won’t have to sit in a clinic and stay for hours,” she said, adding, “We have a WhatsApp support group to encourage each other and share struggles. It’s like a family.”

Jaggasar-Clement believes there are many people in TT with MS but they have not been diagnosed. It is for this reason that MSSF advocates for a centre to assist current members and new ones who are introduced to them after they are diagnosed.

“Advocacy is one of our roles. We are now advocating for the registering of a new drug to treat patients who have primary progressive MS (PPMS). There is one member who is currently disillusioned and is just waiting to die. It is disheartening to hear his story. He believes there is no treatment available to people with his condition. We have already written to the Ministry of Health and are awaiting feedback on the registration of the drug Ocrelizumab.”

Since its incorporation, MSSF has lost three members all of whom had PPMS. Prior to Ocrelizumab, there was no medication to treat this strain of the disease. Prior to that patients would have been advised to watch their diet, reduce stress and exercise. MSSF is about assisting MS patients in a practical way, she said.

Patients with PPMS lack medical relief since there is no treatment available locally unless a special individual licence is granted. On May 2, pharmaceutical giant Roche, held a symposium with medical manager for the Central America and the Caribbean Dr Arnoldo Soto and MS patients at a conference at Hyatt Regency, Port of Spain. Soto spoke about how Roche’s latest drug Ocrelizumab, which is not yet available, has shown positive signs in treating PPMS. Some of the drugs used locally to treat MS are Fingolimod, Rituximab and Beta Interferon. Rituximab is described as a wonder drug. It was designed to treat leukaemia, however, doctors have seen progress in patients using it to treat MS.

MS is an inflammatory demyelinating disease of the central nervous system, characterised by ongoing disease activity, with profound effects on patient independence and quality of life (QoL). During the lecture, Soto, a neurologist, said the disease has no known cause or cure. He added that diagnosis is only done through a process of elimination as there is no standard tests for the disease. Soto said that in his discussion with MS patients and their relatives, most of the symptoms are unpredictable. Fatigue, pain, mobility impairment, muscle weakness, memory loss, respiratory problems and seizures are just some of the many symptoms patients experience. Treating MS is ultimately about managing the symptoms as no two patients are the same, making it even more difficult.

“Caregivers of patients with MS have high levels of distress and a reduced quality of life. Their distress is mainly associated with the psychiatric symptoms and cognitive impairment of the patients and their physical impairment,” Soto said then, adding that there is sometimes a trade-off between efficacy and safety.

MS day will be celebrated on Thursday and the theme is Visibility, and on June 1, MSSF will host a commemoration day at the Mariott hotel in Mucurapo.

Jaggasar-Clement hopes there will be greater awareness of MS long after the observance.

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