Date: Sunday, October 21, 2018
Session Title: 3S041 ACR/ARHP: Patient Perspectives Poster Session
Session Type: Patient Perspectives Poster Session
Session Time: 12:00PM-2:00PM
I felt relieved when my diagnosis was confirmed, but upon hearing Lupus and Nephritis and no cure, I felt shattered. I was referred to the only Rheumatology clinic in the country.
The Rheumatology Initiative tRi founded in 2012, is a non-profit organization dedicated to providing education, advocacy and research into the autoimmune rheumatic conditions.
Much has been achieved in reducing mortality of patients with autoimmune conditions worldwide. Unfortunately, for a significant proportion of patients in developing countries like Ghana, poverty limits access to these lifesaving medications and other supportive services that improve survival.
tRi established a Patient Assistance Program which provides emergency medical assistance to those with a life altering diagnosis of an autoimmune disease, but are financially challenged and also life skills training as a long-term, empowering solution. Over the past five years, tRi has helped over 158 patients with treatment support. On average these can cost between 100 to 500 dollars a patient.
As a direct beneficiary when I had lupus nephritis in 2014, it was a huge source of relief to not have to worry about what would happen to my kidneys if I delayed treatment, due to challenges funding my induction therapy. I complete the whole course of treatment successfully and have been in remission for the past 2 years.
tRi support group, Rheusolute, focused on young and adolescent persons currently has over 180 members and doubles as source of information and healing interaction outside the consulting room.
As part of ensuring remission, I get daily reminders from tRi to take my maintenance medications, which reduces my tendency for non-compliance.
Knowing there were young people like me in the support group with similar conditions chasing their dreams and aspirations gave me so much comfort and strength, it’s like a second home, always ready to listen and advice.
I have graduated from a beneficiary to an administrator who coordinates access to life saving medications for other patients who have an emergency.
It’s with a sense of satisfaction that I end each day knowing that I was involved in potentially saving a life just as mine was.
Quality of Life:
tRi is currently the only support group and advocate for autoimmune conditions in Ghana. Life with lupus can be very traumatic with high medical costs, flares and several other negatives. Taking daily medications hasn’t been easy.
Living with Lupus means life style changes; always having a backup plan since plans can change at any time. Learning to know myself better, engage in less stressful activities, eat healthy and being positive. But, not even the previous fear of death I had persists.
I can now face the future with much hope and I would continue to tame the ‘wolf’ and take control of my life because lupus does not determine who I am.
To cite this abstract in AMA style:Narh PP, Can-Tamakloe AAAA, Dey ID. Support Groups and Patient Centred Care; Making a Difference in the Lives of People with Autoimmune and Rheumatic Conditions in Ghana [abstract]. Arthritis Rheumatol. 2018; 70 (suppl 10). https://acrabstracts.org/abstract/support-groups-and-patient-centred-care-making-a-difference-in-the-lives-of-people-with-autoimmune-and-rheumatic-conditions-in-ghana/. Accessed October 1, 2022.
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ACR Meeting Abstracts - https://acrabstracts.org/abstract/support-groups-and-patient-centred-care-making-a-difference-in-the-lives-of-people-with-autoimmune-and-rheumatic-conditions-in-ghana/