Blog

By Barb Adams (Histio Parent)

Can you imagine “Histiocytosis: The Musical?”

The idea may not be as far-fetched as it seems.

In 2018, “Hemophilia: The Musical” had a one-night run at a New York City theater. The project,
featuring 25 teenaged hemophilia patients, was the community-building, loneliness-combatting
brainchild of a healthcare marketing agency and a pharmaceutical company.

The Histiocytosis Association might never be on Broadway (well, except for our address), but
we also know how isolating a diagnosis can be. Since the early 2020s, our online support groups
have provided a safe space where people affected by histiocytic disorders can share their
difficulties, concerns, and triumphs.

The Patients Peer to Peer Group meets by Zoom twice a month on Tuesday evenings. Here,
current and former patients can talk freely about their journeys and see how much they have in
common, despite their varied symptoms and different paths.

Moderator Doris Dahdouh invites participants to explore “all the things that obviously and not so
obviously impact their lives.”

The benefit of those conversations is grounded in science.

“Research shows that there is a lot of healing in the ‘You too? Me too?’ approach,” says
Dahdouh, a licensed social worker, psychotherapist, and integrative nutrition health coach.
Knowing you’re not alone

Sheryl Neild can attest to that.

Neild was diagnosed with Langerhans Cell Histiocytosis (LCH) as an adult in 2016 and has been
in remission since 2017. A group regular, she says hearing about others’ experiences makes her
feel less alone. She also appreciates “how the topics, themes, and reflections that Doris
includes let us dig into feelings we may not have thought about.”

Tapping into emotions is therapeutic for VerLaine Henn, too.

Henn’s health issues began in the 1990s but it wasn’t until 2004 that doctors diagnosed Rosai-
Dorfman disease (RDD).

Henn immediately joined the RDD Bulletin Board and RDD Facebook group, becoming a
member of the Patients Peer to Peer Group almost as soon as it launched.

Henn calls the group a “safe, supportive, and non-judgmental community where we can vent
and share progress, good or bad.”

For one participant, who prefers to remain anonymous, the Peer-to-Peer Group is a way of
giving back to the Histiocytosis Association. With our help, he found treatment at a research
hospital, which ultimately led to remission.

“After successful treatment, I felt a duty and wanted to give hope and support to others,” he
says.

“There are often newly diagnosed patients who join these meetings. Often it is a matter of
helping others feel comfortable talking about their situation and knowing that people on the
calls have had similar experiences.”

And, clearly, that they care.

Helping everyone involved.

Whether a patient seeks empathy, information, or a little of both, there are plenty of reasons to
join the group. Everyone is made to feel welcome, whether they mostly just listen in or speak
freely.

Some participants say they even consider the other members an extension of their families.

And they all agree with Sheryl Nield that talking with people facing face similar issues and
experiencing similar feelings helps everyone involved.

That’s one of the things that motivates Dahdouh, too. She says moderating the group gives her
meaning and purpose, and the participants help her as much as she helps them.

“The members take care of each other,” Dahdouh says. “They are wonderful, beautiful-hearted
people.”

In other words, even without a script or musical score, the Peer to Peer Support Group has a
great cast of characters.

If you want to learn more, you can visit our peer connections page and find links to patient, caregiver and grief groups for histiocytosis.