Earlier this month we held a Zoom meeting to bring together the PWS community in Africa. The purpose of the meeting was to share information, create new links and to develop a better understanding of the needs of families living on the continent.
IPWSO currently has two member associations in Africa, in Morocco (Prader-Willi Maroc) and South Africa (PWS Support Group, South Africa). While we know of some professionals working to support people with PWS in other countries, as well as the rare disease organisations also working in the region, we wanted to learn more about the situation for people with PWS in Africa. Are people being diagnosed, at what age? And if they have a diagnosis, then what is the level of care and support? How does this vary across this huge and diverse continent?
We met with families, professionals and rare disease experts from Egypt, Ghana, Kenya, Morocco, South Africa and Tunisia. The association in South Africa has the longest history. We heard from Karin Clarke and Dr Engela Honey who told us about the development of their work and the services that are now available to families in South Africa. Whilst there is more work to be done, they acknowledged that the situation in South Africa is fairly advanced compared to that of many of their neighbouring countries.
In Ghana and Kenya there are well developed rare disease organisations, Rare Disease Ghana Initiative, who recently worked with us to hold a webinar on PWS and Rare Disorders Kenya. They are not aware of many people with PWS but are there to help and will send people our information. In Kenya IPWSO adviser Dr Esther Maina spoke about the need for better training for professionals in hospitals to identify and support the needs of people with PWS.
In the north of Africa there is a mixed picture. A mother from Morocco, and founder of the association there, told us about the success she had had in building an association from scratch, helping to support other families and raising awareness. She also spoke about her own pride in her son’s achievements. From Tunisia we heard about good access to diagnosis but a lack of resources to provide care and support. In Egypt we heard from a relatively new group of mothers who are supporting each other but in very difficult circumstances with very little awareness or state support around them.
In the meeting our CEO Marguerite Hughes spoke about the information and support that IPWSO can provide, she also mentioned our free diagnosis service which will be of use to families in countries where diagnosis is not currently available. We were delighted to be able to bring people together in this meeting and hope that it will be the start of something very positive.
If you are in Africa and would like to get more involved in this work then do get in contact with us. There are also various resources that may be of interest:
PWS information in Arabic, French and other languages: https://ipwso.org/pws-information/translated-guides/
PWS information in English: https://ipwso.org/pws-information/
IPWSO’s free diagnosis service: https://ipwso.org/how-we-can-help/free-diagnosis/
PWS Support Group, South Africa run whatsapp groups for families and would be happy to add people from other African countries: http://www.praderwilli.org.za/
IPWSO’s advice line: firstname.lastname@example.org