Sheefali Asija, award-winning artist and ideaXme humanism ambassador, interviews Patricia Weltin, founder of Beyond the Diagnosis, a nonprofit organization utilizing art and science to inspire research and innovative treatments for people living with rare and neglected diseases.
Creating a Community
After Patricia Weltin’s children were diagnosed with Hypermobile Ehlers-Danlos Syndrome, a disease affecting the connective tissue and joints, she sought out a community for support, not only for herself and other parents, but also as a place for those affected to feel comfortable and alleviate feelings of isolation often associated with having a rare disease.
This need for community and driving awareness inspired Weltin to create her own community in her home state of Rhode Island, creating the Rhode Island Rare Disease Foundation. Off the back of a successful first event, she was invited by one of Rhode Island’s Senators to help develop legislation surrounding rare diseases. Weltin knew exactly how to help inform this. “I don’t need to be told or taught what is lacking in this space. I was living it, and so were all of these people working with us.”
Noting the lack of awareness surrounding rare diseases, Weltin used art as a means to increase awareness and inspire research – “It’s starting conversations with conversations.”
Beyond the Diagnosis
Beyond the Diagnosis started with a portrait exhibition consisting of 17 portraits of people with rare diseases, traveling around medical schools in New England. Weltin’s hope was that they “would capture the attention of medical students and that they would see us less as a disease and see our humanity, in the hopes that they would become more interested in these diseases.”
After being featured in the Boston Globe and on CBS morning television, demand has grown incredibly. “I cannot meet the demand for this exhibit, especially during the month of February.” Rare Disease Day takes place on the last day of February, which is extremely fitting when there is a leap year, giving an extra nod to the day’s “rare” aspect.
Rare Disease Awareness
There are over 7000 rare diseases, of which less than 4 percent have a cure. In the U.S. alone, there are 30 million people with rare diseases. Weltin recognizes that the scope of this goes even further.
“The impact it has on your family is, you know, mothers often can’t have somebody working, or if the person has a rare disease, they’re on disability. There’s so many aspects of it that are just crushing, and I think that people don’t recognize that in this society.”
Global Growth
The collection has since grown from its inception to consisting of 110 portraits working with 78 artists. Beyond the Diagnosis works internationally now, with a portrait having just been exhibited in Ireland, and more are being created of children affected by rare diseases in Iraq and Ghana. Looking forward, Weltin and Beyond the Diagnosis are trying to gain funding in order to open a gallery to house the entire collection, which could then travel as a whole internationally. She is also exploring how videos could not only increase awareness of these diseases, but also be implemented into education for both those training within the field of medicine as well as children, as a way to educate, inform, and normalize conversations around rare diseases.
A Labour of Love
For Weltin, her drive and inspiration still come from the same source as when she first started Beyond the Diagnosis. “When it comes to your child there is nothing you will not do. There is no greater motivator than love, nothing.”
Sheefali Asija originally started out painting portraits, and tells Weltin that she “would be honoured to paint one of your kids in your extended community,” to which Weltin happily responds that she’ll contact Asija to collaborate this coming summer.
Credits: Sheefali Asija interview text, audio and video.
If you liked this article, be sure to check out our interview on how art and science are being combined to fight climate change!
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