Patricia Weltin fought relentlessly to have doctors finally recognize the rare diseases that have ravaged her two daughters’ lives — hypermelanosis and Ehlers-Danlos syndrome.

Olivia, 19, has a deformed hand and foot, as well as scoliosis. She has undergone 21 surgeries, including one for a tethered spinal cord. Hana, 16, just had a hip dislocation.

“As a mom watching one child in pain is so very hard,” said Weltin, a single mom from Rumford, Rhode Island. “Watching both children in pain is unbearable.”

Some of Olivia’s teeth have fallen out and for a time, she has been in a wheelchair. Both girls have dark whorls on their torsos from hyper-pigmentation.

“One of the biggest issues of a rare disease is isolation and loneliness,” Weltin, 54, told NBC News. “Olivia has no friends. None. No one comes to visit and my heart breaks.”

So Weltin founded the Rare Disease United Foundation, which this year has created an art exhibit —portraits of real children suffering from 32 different conditions and designed to raise awareness among doctors for better diagnosis and research.

In the first month, the exhibit, “Beyond the Diagnosis,” was viewed by 100,000 people at medical schools around the country. It debuted at Brown University in February and is scheduled to go to Harvard Medical in November and then on to the National Institutes of Health in 2016.

Read more of this story at the source. 

4 thoughts on ““Beyond the Diagnosis” Art Exhibit Displays Patients With Rare Diseases”

  1. Bj Sklar says:

    Do you supply dates and locations of this traveling exhibit?

  2. Tina Marshall says:

    My cousin Tracy’s daughter Josie is suffering from arsacs. There is no cure and this disease will eventually land her in a wheelchair and other things she will have to be taken care of. It is a form of a neuromuscular disease and it breaks my heart to see such a young full of life 13 year old just keep diminishing and there is nothing no one can do because there is no cure. Thank you for making people aware of these rare diseases and how these human beings lives will forever change. Thank your and God Bless you and your family.

  3. Tina Marshall says:

    My cousin Tracy’s daughter Josie is suffering from arsacs. There is no cure and this disease will eventually land her in a wheelchair and other things she will have to be taken care of. It is a form of a neuromuscular disease and it breaks my heart to see such a young full of life 13 year old just keep diminishing and there is nothing no one can do because there is no cure. Thank you for making people aware of these rare diseases and how these human beings lives will forever change. I would love to make people aware of her disease so other people may not suffer or take as long to find out what is wrong with their child as it did my cousin. She went to several different specialty doctors because she knew something was wrong and with no prevail all her test came back normal and she was told she was just a normal kid with Balance issues. It took over 5 years and alot of worrying, heartache, frustration and finally the answer. Thank you and God Bless you and your family.

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