Dr. Ida Dzifa Dey, a nominee of the MTN Heroes of Change Season VI is a Rheumatologist physician specialist at the Korle Bu Teaching Hospital.
She hates to see both women and children go through much pain. It is for this reason that she set up The Rheumatology Initiative (TRI) Ghana to increase awareness, provide information, tips and the latest advances in the care of people with autoimmune rheumatic diseases, with special focus on young and adolescent persons with these conditions.
Dr Dey said she decided to move into this specialised area after observing how young people and women often came with kidney failures at their prime age.
The Rheumatology Initiative Ghana
She founded the TRI in 2012 as a non-profit organisation dedicated to providing education, advocacy and research into autoimmune rheumatic conditions in Ghana and Africa.
As part of strategies to achieve their aims, the foundation meets once every month to provide a safe, conducive and affirmative environment for people living with autoimmune diseases, those coping with challenges in lifestyle (marriage, work, school, career choices etc.) and how to deal with relapse, death and dying.
Dr Dey, who is the Director of the foundation, reinforced that for a significant proportion of patients in developing countries such as Ghana, there is limited access to life-saving medications mainly due to financial constraints which limit the treatment benefits that can be offered.
The foundation has also established a Patient Assistance Programme which aims to provide emergency financial assistance to those with a life-altering diagnosis of lupus or other autoimmune diseases and who have a high financial need. They also provide training as a long-term empowering solution.
Dr Dey, whose dream is to establish a lab said, “Here when you diagnose, some of the patients are unable to pay so they end up dying.”
• What is your motivation?
In 2012, on my return back home from training as the first rheumatologist in Ghana, I realized that having firsthand experience about the need for a rheumatology service didn’t mean other people including the health service saw it. I was alone, patients were suffering and dying. 48% of admitted lupus cases died! Contrast to what I saw in the UK where in 2 years I did not experience any deaths. These patients were young people in the prime of their lives and if they didn’t die they ended up with permanent kidney damage requiring dialysis for life which cost more to the health service. Many patients believe their diseases to be a result of “spiritual attack” based on the wide symptom complex and using scientific terms and “foreign educational material “to explain their disease to them is very difficult with the resultant effect being a lot of patients default to seek spiritual or herbal treatment, coming back only when the disease is far advanced.
Now these were entirely avoidable with the right education to make patients get diagnosed
early before the disease has caused any damage, with early treatment with appropriate
medication. Now this required education of patients, health workers who unfortunately are
lost when it comes to these conditions and making sure that at the critical stages where this
damage to organs can be salvaged the appropriate medications was available for those who
can’t afford it.
Explain your project
The Rheumatology Initiative, tRi is a non-profit organization founded in 2012, dedicated to
providing education, advocacy and research into the autoimmune rheumatic conditions in
Ghana and Africa. Autoimmune diseases occur when the body’s disease fighting cells get
confused and attack itself, as a result of the body failing to recognize its own component
parts as part of itself, leading to an immune response against its own cells and tissues. The
body’s own immune system begins to attack normal tissues cells and organs within the body.
Depending on the part of the body it sees as foreign, that is where the immune system
attacks and causes the disease manifesting there.
Why should you be concerned?
Autoimmune diseases have been on the rise for decades worldwide. It is more common
than HIV/AIDS, leukemia, sickle cell disease all combined together. Autoimmune diseases
together constitute the fourth largest cause of death among women. It affects more people
than heart disease worldwide. It is poorly understood, poorly recognized and of apparent
increasing incidence in Africa. There is therefore need to raise more awareness about such
diseases as it can cause a lot of damage both physically and psychologically on both patients
and their care givers. The Rheumatology Initiative, tRi with special focus on young and adolescent persons with these conditions seeks to create advocacy for people with such conditions, and help to
conduct research into the causes and treatment of such conditions as well as providing
support, services and hope to persons affected with these conditions and their loved ones.
- How do you fund the project?
Initially this was self funded for the best part of the first two years by myself with support from my husband, until 3 years ago when we devised ways to raise funds to try and sustain the charity.
We have held three major fundraising events to support our patient assistance program: an annual poetry and music show we organize ourselves. This year we used a jumble sale to raise some
funds. We run social media emergency fundraising campaigns to support patients who were in urgent need of funds for medications/procedures.
We continue to urge the general public to support our initiatives by donating via mobile money. -
How much impact has your project had?
As part of strategies to achieve our aims, we have set up a support group, Rheusolute, for young and adolescent persons with autoimmune conditions. This group meets once every month and currently has over 180 members with conditions such as Rheumatoid arthritis and Lupus and doubles as source of
information and healing interaction outside the consulting room. We have subgroups of persons living with Lupus (G.L.OW), persons living with Rheumatoid Arthritis (G.R.A.S.P) and persons living with more than one autoimmune condition (G.E.M.M.S) which allows us to reach members more closely and
address condition specific needs as well as adult members. We have also established a Patient Assistance Program which provides emergency financial assistance to those with a life altering diagnosis of lupus or other autoimmune diseases and who have a high financial need and by providing free emergency medication and lab tests, free medical consultation etc.
Over the past five years, we have supported over 128 patients with lifesaving treatments. We also to provide handicraft training as a long-term, empowering solution to enable patients learn a trade to support themselves and augment their salaries to be able to afford these lifelong treatments that are so expensive.
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What are your major achievements?
Over the years, through these initiatives, we have been able to achieve the
following: -
We have supported the Rheumatology Unit of Korlebu Teaching Hospital that currently treats over a 1000 people.
• We Lit up the National independence monument of Ghana purple in May 2017 to raise awareness for Lupus this is the first time this has been done in Ghana/Africa.
• We organised a one day educational update course in Rheumatology for over 120 doctors from all over Ghana in August 2017 to empower them to be able to diagnose early and efficiently various autoimmune conditions as this would help augment the lack of specialists.
• We supported the first rheumatology nurse to get a training programmme to help build capacity in the specialized area.
• We have run 66 support group sessions and activities, with an average attendance of 30 to 35 patients monthly over the past 5 years.
• We have provided free or discounted emergency medication to over 55 patients every year and have also provided free or discounted lab tests to 30 patients. -
What challenges have you faced?
1. Lack of funding
2. Lack of awareness about these conditions even at the
medical and government level
3. People “stigmatizing “ what they don’t know and calling
these illnesses spiritual illnesses which makes seeking proper
treatment difficult and those who have it would rather hide it
than let people know. -
How do you feel when you see the impact your
work has had?
I can sleep better now. Knowing that I have a way of solving the next patient who comes in a crises
woes and hopefully I can prevent the next unnecessary death or kidney or brain damage.
• Do you have any plans for the future?
Yes we want to expand this to all regions of Ghana currently we have cell groups in the regions but no doctors to help run them, in fact we have been contacted by doctors from Nigeria and some sub-Saharan African countries to help them start tRi in their countries.
Currently, because of lack of specialist doctors we are trying to increase the training of non specialist doctors to help expand this services to all regions.
• To disseminate knowledge about autoimmune Rheumatic conditions to patients, doctors and the general public via Mobile Short code creation.
• To provide laboratory services locally to reduce costs of these services by setting up our own lab
• Improving access to emergency life saving medications for financially handicapped patients with severe autoimmune conditions in Ghana.
• One of our major goals is to find self-sustaining ways of generating funds to keep this
initiative going and this we hope to do by: The tRi-Shed – A Charity Shop Project.
• The tRi-shed, we believe, would help our charity projects, the environment and the community, in a variety of ways: Fundraising, Job Opportunities: it would also serve as job opportunity for our members, many of whom lose their jobs because of their autoimmune conditions. Close to one out of every three employees with rheumatoid arthritis (RA) leaves the workforce .Training has already begun for interested members of the support group in soap making and bead craft.