Editor’s note: Two days after this article appeared, NIH director Francis S. Collins apologized to Beyond the Diagnosis about the portrait request described here. Collins said the NIH will display a series of portraits for its “Rare Disease Day and a future showing at the Clinical Center.”

My friend and fellow rare-disease warrior, Patty Weltin, recently reached out to me on social media.

“I’m so upset,” she said in a private message. “Beyond the Diagnosis isn’t going to the NIH.”

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Beyond the Diagnosis” is an exhibit of portraits of people — mostly children — with rare diseases that have been created by a small army of volunteer artists. More than that, it’s a presentation of the colorful souls within those seemingly imperfect bodies and a bright, uplifting, safe way to display them.

I was shocked that the show’s organizers were withdrawing it from a planned two-month stay at the National Institutes of Health. The NIH is renowned for its efforts in advancing medicine and improving the treatment of disease, including rare diseases. And it has hosted the exhibit before, as have the FDA, the Mayo Clinic, Harvard Medical School, and others.

What could have prompted this? According to the NIH Clinical Center, “the hospital art curator expressed to the exhibit organizer that one of the portraits in the collection of rare disease portraits may evoke negative emotions in patients.” I’ve seen the portrait the NIH wanted removed, and all I saw was a happy, vibrant young man.

My shock turned to anger. It was a visceral response, one I have, unfortunately, felt many times before.

When I was growing up in Utah, my sister was my best friend and greatest champion. As a youngster, I didn’t know she had special needs — she was just my sister. Once I realized that her life in school was made difficult by some of the other kids, I became her defender.

One day I arrived home from school as the phone rang. A mother was calling to tell my mom that I had been throwing rocks at other kids. As I pulled off my boots and threw my winter coat in the closet, I told my mom I had been throwing snowballs, though they did have rocks in them for greater impact and distance. But I was throwing them only at the kids calling my sister stupid, and a dummy.

My parents understood, though they also tried to teach me to be diplomatic.

My son, Glenn, began having seizures when he was 3. I was better prepared than most people I know to adapt to my family’s new normal. We searched for the cause of the seizures for years. In 2015, when Glenn was 12, he was finally diagnosed with the ultra-rare KBG syndrome. We formed a foundation to help the other 60 patients we knew were out there, and through that I met Patty. Two years later, Glenn’s portrait became a part of the “Beyond the Diagnosis” exhibit, representing the now more than 300 individuals in the world with KBG syndrome.

My experiences with rare disease have shown me that old prejudices, like “if it’s not perfect, it’s not worthy,” remain to this day. That’s wrong. I believe that a person’s value is not measured by how she or he looks, or even acts, but how he or she makes you feel.

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When Patty told me about the NIH asking to remove one portrait from “Beyond the Diagnosis” because it might distress patients at the NIH Clinical Center or “evoke negative emotions” in them, I mentally picked up the rock and began packing snow around it.

I’ve lived in this so-called distressing world my entire life. I see a family of variety, where differences are as common as freckles and accepted by most — not just those who revel in rising to the occasion. I see immense love and a deep appreciation for the more fundamental things in life. I see people who decorate their child’s hospital room for Christmas, not just the front room at home. These people take their joy with them.

I know how, when someone with a complex medical condition meets someone else who has personal familiarity with it, they share a depth of understanding that many others can’t comprehend. It’s sharing stories about the best way to keep a catheter or port open and swapping ketogenic recipes at midnight, because who sleeps in the world of rare diseases? It’s standing in front of legislators asking them to help your drooling child and putting your “distressing” world on display so you can make it a better place. Hiding it helps no one, except those who would rather not look.

The organizers of “Beyond the Diagnosis” did the right thing by withdrawing the show from the NIH. Its request to remove one portrait is the same as asking to remove them all.

Annette Maughan is CEO of the KBG Foundation.

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  • So, the NIH is preventing people from seeing “real photograph” of people with deformities. We as a nation are in deep trouble. NIH doesn’t like reality. How are they going to cure diseases if they are disgusted seeing them? How are the going to promote or make awareness when they are bias? National Institute of Health should be renamed with National Institute of the Disgusted.

  • My name is Patricia Weltin. I am the CEO/Founder of Beyond the Diagnosis. I am delighted to share this update:

    Yesterday, I received an invitation to bring the exhibit “in its entirety” to the NIH. The email made no indication that something had gone horribly wrong. I sent my response to the email this afternoon and explained that we are in discussion to house the portraits at another venue, but we still felt that the situation and the hurt it caused was not really addressed by the NIH. Later today, I received a call from Dr. Francis Collins. He expressed their deep regret for what happened and gave me his personal apology. Although, we are already in talks to exhibit elsewhere, I told Dr. Collins that we would still be happy to bring portraits for their RDD events. He was thrilled and asked that we come back every year with whichever portraits we decide to bring. I’m so grateful and proud of all the people who stood up for this one child, in order to do the right thing for us all. Honored to advocate for you amazing people!!! Special thanks to Annette Maughan for writing such an impassioned letter about exclusion and why there is no place for it at the NIH. Thanks everyone. We have a happy ending and could not have done this without your support! Also, a huge thank you to Dr. Collins for being a true leader.

  • I’m an emergency physician and am disgusted by the action of the NIH.

    These are the faces of humanity, with all of its imperfections. That is what makes it so beautiful. This display is science, medicine and art all in the same package. The NIH made a mistake. They missed the entire point.

    Beyond The Diagnosis did the right thing in pulling out. Let them take their exhibit where the beauty of these children can be displayed in all their glory. Unencumbered by ignorance.

  • Hello, My name is Laura. I am writing in regards to NIH’s decision to not include one of Beyond The Diagnosis portraits in their exhibits. I know your getting tons of disapproving emails. I’d have to agree with them…I feel the same way the Beyond the Diagnosis Families do… I am a SWAN (syndrome without a name) Warrior and Proud Mom of a SWAN / CHD Angel. I realize your not feeling comfortable about one of the portraits. Being in the field that your in I’m sure you know that, “being scared,” to open people’s eyes to rare diseases / disorders is something that you can’t afford. I remember when I lost my son….in the beginning I talked to many folks about it and yes it scared the hell out of people. Child and Death in the same sentence is like water and electricity. It doesn’t mix. It’s forcing folks to confront the unknown, unthinkable and unimaginable about their kids and their own mortality. It’s one hell of a touchy subject that needs to be addressed carefully. The same can be said of opening folks eye’s up to families affected with rare diseases and disorders … it kind of goes hand in hand. We can’t afford to hide it anymore though. More and more folks are being discovered as being affected by rare diseases than ever before. The answer to this is to fund research so that we can learn more about the different diseases and disorders out there. The more we learn the more we can help the families. As I’m sure in order to bring in funding you have to create the awareness. Cancer & Heart Disease is at the for front of media attention. I’m glad of course that they are getting their attention and funding. There is another Lion in the living room, this being rare diseases/disorders. “Beyond The Diagnosis” is one of the key pieces of ammo that’s helping doing this. Raising the Awareness to bring in the funds to do the research. It’s putting a face to the disease (name). If people can see it than they know that it does exist and that we need the help to tame the Lion. Hopefully that makes sense. Please, reconsider your decision. Censorship is not going to work in getting the job done (helping the families ). Thank you for taking the time out to read this post.
    Laura C.
    #BeyondTheDiagnosis #CareAboutRare #lt4xtreme #2T4CHD

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