“The ultimate goal is to see someone with a difference and not see that difference” Rick Guidotti, Photographer of individuals featuring in ‘On Beauty’ Documentary
Febrary 28th of every year is international Rare Disease Day. In an effort to promote the understanding of rare conditions in Kenya, Making More Health and Positive Exposure-Kenya hosted a Rare Conversation Forum. Many gathered to discuss and embrace the diversity of people living with rare conditions, having #RareConversations and sharing experiences. The event highlighted the need to raise community awareness of conditions such as Cerebral palsy, Albinism, Scleroderma and others. As well as how to handle the difficulties faced when access to specific health needs are limited.
To kick-start the event, the attendees watched the ‘On Beauty’ documentary, illustrating beauty in diversity and shared stories of people around the world living with rare conditions. The documentary displayed stories from 10 years ago, sparking the question – have these experiences changed for the better? Questions around the experience of people living with rare conditions and their experience of seeking medical attention and healthcare shaped the conversation that followed. The suggestive conclusion was that the current knowledge of rare condition by our medical professionals is not as in depth as it should be.
In reflection of the video and conversation, participants were encouraging self-acceptance and said “support from family is crucial”. Participants encouraged each other to conduct educated conversations within their communities in order to change the misconceptions against them and increase communities support for “diverse” persons.
During the Forum, people with rare conditions and family members of a person with a rare condition told their personal stories. The speakers were brave in sharing stories of social rejection, abandonment and financial devastation. The key root cause for challenges of the majority of the speakers was the lack of awareness in their communities and in healthcare providers. These stories called attention to the need to make these #RareConversations more vocal and visible. Everyone who spoke was an advocate for support groups and networks, where they can help each other understand and love themselves and their children, leveraging each other’s strengths to help make their lives healthier and happier.
By the end of the forum, participants decided on their next steps and what needs to be addressed in society, regarding rare diseases. For starters, people living with rare conditions are encouraged to speak out and join support groups because creating partnerships and support networks is crucial. Discussions and #RareConversations should be conducted on education forums, creating platforms where people can learn about rare diseases and become aware of their basic human rights. Policies surrounding prices of products and services for these people need to be altered. Lastly, education to care givers and healthcare professionals must include rare conditions. We are all human and we all have a voice, diversity and differences need to be respected and embraced.