October 2012 was the month I decided I had to actively start a support network for young ones living with Diabetes in Ghana. I had been working in Effia Nkwanta Regional Hospital for about 2 years and I had noticed that we had a number of youngsters living with Diabetes who were poorly managed.
My first encounter with a young person with Diabetes was when I was a resident in Korle Bu Teaching hospital. I remember the teenage girl who came for Monday clinics with her uncle. He was always complaining about her behaviour of not eating the right things. I remember we bonded in a funny way such that every time she came for review, the nurses would make sure that she sees me and we would always have a good laugh.
Next encounter was with 11 year old Issaka who was newly diagnosed and brought from the polyclinic to our team on duty. He and his dad looked so scared that day as they had no clue what was going on. Prof Neequaye asked me to take care of him when he was discharged making sure that he did not miss any school. This began our 7 year relationship. With the help of other doctors we made sure that he never missed a day of school and was rarely admitted for complications of diabetes. He currently a Senior High School Graduate awaiting entry into a tertiary institution.
I started Diabetes Youth Care in the Western Region (with the aim of providing some form of support for young ones under the age of 30 living with diabetes) with 5 young ones. Over the years, it has grown to a population of more than 100 with most of them in the southern part of the country.
The primary aim is to create a platform to educate, inform and manage these young ones.
One of the first things which struck me was the huge void in managing adolescents with chronic diseases. I am not an adolescent health specialist, but I realised that just paying attention and having a little bit more time for these young ones will go a long way to make them comfortable enough to talk to you and share their problems.
Also, their unique problems did not encourage them to attend chronic disease clinics with the adults. I found out that the adolescents would rather skip the clinic or present to the clinic late, than have to sit with the adults.
Some of the questions or comments made by the adults at the clinic were at times derogatory.
- You were eating too much sugar so you got diabetes
- Oh no I don’t think I would let my son (or daughter) marry someone with diabetes.
- Are you bringing your mother (or father) to the clinic?
- How can you get diabetes at this young age? What did you do wrong?
Comments from health personnel were
- Screaming out the blood glucose results and reprimanding them for the abnormal values
- Telling them to stop eating too much sugar
- Telling them they would die because of the diabetes (especially at the time of diagnosis)
With their privacy almost non-existent, most of them would rather not come to the hospital. This resulted in poor compliance to their medications and development of complications leading to poor quality of life.
Our healthcare institutions are mostly not adolescent friendly as many do not have clinics solely for this category of people. Managing diabetes is also expensive. Insulin which is supposed to be under the coverage of health insurance is not in most health care facilities. The hospitals which stock the medication are few and when they do, they provide only one vial per month which is highly inadequate.
Vital to the management of diabetes are glucometers and strips for home monitoring, syringes for insulin injections, none of which are covered by the national health insurance. Most of the young ones living with diabetes cannot afford to buy these and rely on either monthly or 2 monthly checks of fasting blood sugar when they come to the hospitals for review.
Education about diabetes is minimal especially when it comes to managing children and adolescents living with the condition. With limited number of paediatric endocrinologists in the country, most young ones when referred to the tertiary centers refuse to report due to the high Doctor to patient ratio. Most of them resort to herbal treatment or prayer camps and these results in dire consequences/complication.
The journey so far…
The main aim of the Support Network Diabetes Youth Care
- To serve as a support group for young people living with Diabetes Mellitus
- Educate young people living with diabetes about nutrition, eye care, foot care, etc.
- To share information about trends in the disease management
- To teach newly diagnosed young people with Diabetes Mellitus how to deal with various problems they may encounter
- A platform for sharing stories about living with diabetes to the general public
- Solicit for various supports in relation to Diabetes care and management
The team comprises of both medical and non medical volunteers who help with monthly support group meetings held currently in 3 regions (Western-Takoradi, Central-Cape-Coast and Greater Accra-Accra).
There is also an online support network for both parents and wards living with Diabetes to answer questions and concerns.
There have been 2 donations of insulin for the young ones under the age of 23 living with Diabetes, and free glucometers and strips (2013/14) from the International Diabetes Federation (IDF)
In order to educate parents, wards and teachers, 3 brochures have been created and distributed to help in educating the general public and guardians about managing diabetes especially the acute emergencies of diabetes. This has empowered both the young ones and the guardians.
Using social media, the support network has also been able to educate the general public about diabetes especially in young ones and shared stories encouraging other young ones living with chronic diseases to reach their fullest potential.
Financing of the support network is mostly through donations by friends and family. Major events like the World Diabetes Day in November are sometimes supported by corporate bodies.
A lot is required in the management of diabetes in the young and it is the prayer of the support network to have holistic care for every young person living with diabetes in Ghana.
We hope that all persons living with diabetes will have the multi-disciplinary management comprising of
Peer Support network
And most importantly access to insulin and other implements required in the management of diabetes, i.e. glucometers, strips; syringes and affordable laboratory monitor like the HbAIC (glycated haemoglobulin).
Future is bright for the young ones in the support network. Diabetes Youth Care hopes to be in every region in the future and would be there to support every young one who is diagnosed with diabetes and support the families also as they go through difficulties which they may encounter.
Diabetes Youth Care has given a lot of hope and chance of survival to young ones living with diabetes and this is seen in the stories told by the members after they join the group. The peer support has be great in creating friends who share and encourage each other daily and mentors for the younger ones living with diabetes.
The current motto is #DIABETESWONTSTOPUS
You can support Diabetes Youth Care by visiting our website www.diabetesyouthcare.org (donate your time or money)
Invite a young person living with diabetes through our contact on social media www.facebook.com/diabetesyouthcare
or on 0503979411 (voice or Whatsapp)
Dr. Nana Ama Barnes
Effia Nkwanta hospital