Hello RareZim Fam!!! Apologies for the long hiatus, we were still recovering from last year’s burnout😫😪, but we are back! What better way to start the year than to talk about Rare Disease Day?
What is Rare Disease Day?
Rare Disease Day is an awareness event that takes place every year on the last day of February, February 28 or February 29 in Leap Years—the rarest of calendar dates to underscore the nature of these diseases—to focus public attention on rare diseases as a public health concern. Rare Disease Day raises awareness for the 300 million people living with rare disease around the world and their families and carers. The long-term cause of the Rare Disease Day campaign is to achieve equitable access to diagnosis, treatment, health and social care, and social opportunities for people affected by a rare disease. It was first observed in Europe in 2008 and established by EURORDIS, the European Rare Disease Organization.
What happens on Rare Disease Day?
Patients, their families, caregivers, researchers, advocates, and others get involved through storytelling, media interviews, posting stories, videos, and blogs online, hosting or attending events, and educational initiatives in classrooms and on college campuses. A wide range of activities are planned and executed to celebrate the day.
What do they mean by “Show your stripes”?
You might have come across the hashtag “#ShowYourStripes”
on social media platforms on Rare Disease Day and are probably wondering what it means. The phrase takes its cue from the zebra, the mascot of the rare disease community, which is known for its distinctive stripes. Showing your stripes means embracing one’s uniqueness and expressing support for over 300 million people living with rare diseases worldwide.
How do we celebrate Rare disease day in Zimbabwe?
This year one of our parent organizations, Child and Youth Care Zimbabwe, took the initiative to celebrate this day with the rest of the world. They held a Rare Disease Art Competition for students from various schools across Harare, to showcase and raise awareness about rare diseases in Zimbabwe, to commemorate this day. The Rare Disease Art Exhibition, for the pieces from the competition, was held on the 28th of February 2023 at The Heritage School in Harare. Caregivers of children who live with rare diseases, together with their children who live with rare diseases, came in their numbers at the commemoration. At the event, lived experiences were shared by the father of a child who lives with a rare disease and by a school student who lives with a rare disease. They shared the challenges they face in their daily lives such as stigma, discrimination, and lack of financial support to get medical assistance.
Different schools attended the art exhibition and these schools included: The Heritage School Maranatha Senior School, St. Christopher’s School, and Chisipite Senior School. Guests from CIMAS, Dr Tsitsi Moyo, and the chairman of the CYC board, Mr Mapundu, were also present at the event. They gave splendid presentations on information related to rare diseases.
Various projects were submitted, which ranged from digital work to colour work to presentations. With any competition, the selection was hard because all the art pieces were amazing, and reflected how passionate the students are about advocacy. Below are a few art pieces that were done by the students.
Art piece
The art piece above is a depiction of Alice in Wonderland syndrome also known as dymetropsia or Todd's syndrome which is a neuropsychological condition that causes distortion of perception. The syndrome is named after the sensations experienced by the character Alice in Lewis Carroll's novel Alice's Adventures in Wonderland. Alice in Wonderland Syndrome consists of metamorphopsia (seeing something in a distorted fashion), bizarre distortions of their body image, and bizarre perceptual distortions of form, size, movement, or colour. Additionally, patients with Alice in Wonderland Syndrome can experience auditory hallucinations and changes in their perception of time.
Art piece
The art piece above was created by a student to commemorate rare disease day and how beautiful the individuals around them that are affected are. Argyria or Blue Skin Disease is a rare skin condition that can happen if silver builds up in your body over a long time. It can turn your skin, eyes, internal organs, nails, and gums a blue-grey colour, especially in areas of your body exposed to sunlight. That change in your skin colour is permanent.
Poem
The poem above is beautifully written by Mallon.
The Founder and Director of Child and youth Care Zimbabwe, Mrs. Trudy Nyakambangwe, gave the following sentiments when asked about the event " The first art exhibition was an eye opener. We created a platform where children expressed themselves well. They shared amazing Knowledge on rare diseases. It was therapeutic and the quality of both written, and art form was awesome."
The art exhibition was a success with many students from various schools in attendance. Child and Youth Care Zimbabwe was able to facilitate various presentations that gave the students an insight into the life of a rare disease family. The best way to fight stigma is to educate and advocate, this event was catered for that. It helped to target the peers that interact with children with rare diseases five out of seven days of the week. We are looking forward to what the rare disease space will look like a year from now as we continue to see the growth and expansion in the number of advocates.
A mother and caregiver of a child with a rare disease also gave the following sentiments when asked about the event "Takava nenguva yakanaka ende takadzidza zvakawanda zvekuti. Takaona vana vane matambudziko akawanda akasiyana. Ndakadzidza kuti daii zvaibvira kuti patinoita ma meeting akaita seiwaya, tidaidzewo vaya vasina matambudziko vaone kuti ivo vana vavanoseka vane zvipowo."
How you can become an advocate
The pieces posted above are just snippets. To access other art pieces from the exhibition please check out https://instagram.com/childyouthcarezim?igshid=YmMyMTA2M2Y= or https://m.facebook.com/people/Child-Youth-Care-Zimbabwe/100071125435812/ . Please show some love and support by liking, following, and sharing. Following the pages above will also make it easier to see the growth in the rare disease space and will enable you, as a reader to better advocate for Rare families.
Remember
From your RAREZIM medics
Tariro Madamba and Chiedza Mahari
