World Young Rheumatic Diseases Day is on 18 March aiming to raise the awareness and knowledge about young people living with rheumatology diseases and to encourage early diagnosis of the diseases to parents, doctors, primary practitioners, teachers, and the general public with immediate referrals to specialised paediatric rheumatologists in each country including South Africa.
Tygerberg Hospital has a dedicated Paediatric Rheumatologist, Dr Deepthi (Dee) Abraham who currently heads up and runs the Paediatric Rheumatology and Immunology Outpatient department that sees patients on every Tuesday and Wednesday. Severely sick children with chronic rheumatic conditions are admitted into Ward G3. The division was started by retired Emeritus Professor Monika Esser who unconditionally continues to care and support these children. Rheumatic conditions affect amongst others the child’s joints, muscle and bone causing debilitating and deforming disease that leave the children disabled if left untreated. The development of new medications and improving multidisciplinary collaborations amongst specialists and allied health science partners has remarkably changed the outcome for these children. The Paediatric Rheumatology European Society is working in collaboration with Paediatric Rheumatologists who finds collaborators and sponsors around the world to make WORD happen.
Dr Dee shares, “We hope that awareness will have a ripple effect on all levels of practitioners who come in contact with these children at primary, secondary and tertiary level hospitals and improve the level of treatment they receive and their prognosis worldwide”.
Sharing stories from the heart of the kids with childhood arthritis: Ronell Abrahams currently 17 years old, was 7 when she got sick and was only diagnosed at age 10 with Juvenile Idiopathic Arthritis. Ronell shares, ”In the first place, I did not know what arthritis was but as I grew up, I started to realise what it meant, sometimes it’s hard to do stuff that you could once do, and sometimes I can’t even go to school because I’m in pain. On some nights I can’t even sleep because I’m in pain and I get emotional. I don’t like to show it. I would rather keep it in because I feel like I don’t have anyone to talk to and no one really understand what I’m going through. I don’t always like taking my medication but I take it because I know it’s going to help me. I cope better with the support of my family. I appreciate everything they have done for me until now. I also want to thank my doctors for everything they have done for me. They are always helpful and I have learnt a lot about my diagnosis and they have taught me that nothing can hold me back. I’m my own role model because of my diagnosis I won’t let anything get me down. My mom is my greatest inspiration!”
Cleo Otto, currently 17 years old, was diagnosed with Polyarthritis at the age of 2 years old. Cleo explains, “I wasn’t able to walk properly and was diagnosed with arthritis at two years old. Living with arthritis has been tough, I have my down days but I’ve become so used to it. It doesn’t really bother me anymore because it doesn’t define me as a person. It has made me such a strong person. Since day one I’ve been getting the best treatment from the best doctors at the Tygerberg Hospital. They are doing a great job, assisting me to handle my condition and live as a normal young adult”.
Herewith link: https://www.pres.eu/activities/word-day/about-the-word-day.html
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