All Hands on DRESS: The patient perspective with Jeremy Sauer

DRESS Syndrome is a relatively unknown and under-researched severe reaction to taking medicine. And one of the best ways for people to better understand this life-threatening disease is by hearing directly from people with lived experiences. In this blog, we feature DRESS Syndrome survivor Jeremy Sauer, who is a cancer researcher and drug developer from Washington state.

Jeremy Sauer after recovery from DRESS Syndrome

1.    When did you develop DRESS Syndrome, and what drug(s) is believed to have caused your reaction?  

I developed DRESS in October 2025 after a single dose of Nemluvio (nemolizumab-ilt).

2.    How long did it take to get a diagnosis? Did you face challenges along the way? 

The diagnosis took one month. This is the first reported case of DRESS due to Nemluvio among very few reported cases with other biologic drugs. Most of my care team had never heard of DRESS, and so the symptoms were written off as eczema.

3.    What has surprised you about having DRESS Syndrome? 

The immune system is such a vastly powerful machine, and it's amazing that most of the time it works so well. However, when it dysregulates, that power can be devastating with a complex interplay between myriad cell types that can affect numerous organ systems.

DRESS is not "just a rash" as many DRESS patients hear. The bone-crushing fatigue was shocking. I have always been a very energetic, ambitious person, and in the throes of DRESS, there were days where the slightest exertion was nearly impossible. 

4.    What has your recovery been like, and are you managing any long-term

effects?

Jeremy Sauer during DRESS

Recovery has been slow with many cycles of flare and recovery with long-term immune dysregulation. Overall, I feel incredibly fortunate to have survived the experience.

5. Looking back, were there early signs that were missed or dismissed — anything you wish someone had recognized sooner?

The diagnosis took over a month due to the lack of my care team's familiarity with DRESS and several missteps with reporting blood work.

The systemic effects of DRESS are poorly understood, and I wish had more of a comprehensive care team to manage various organ involvement. The steroid taper was complicated given high dose and flare-recovery cycles, and I wish I had more support in planning for the treatment.

6.  What advice do you have for people who are newly diagnosed?

Connect with the DRESS Syndrome Foundation! Initial diagnosis is terrifying, and learning more about the disease and finding a care team who has experience with it are key. Once diagnosed, I resisted taking high-dose steroid for fear of side effects, but if I could do the treatment again, I would have started taking them sooner.

Do not neglect the mental health side of the disease — the trauma and PTSD are very real. The role of caregiver is so critical. My wife Susie was my bedrock through this ordeal, and without her care, I am not sure I would have made it through.

7.    What do you want the general public to know about DRESS? 

Know your body, and be an outspoken advocate for yourself. If you feel something is not right, speak out and find help.  

8.    What do you want clinicians and researchers to know about having DRESS?

The disease is wildly dynamic. I was surprised at how non-linear the recovery was and am sure there is some terribly interesting underlying biology that we do not fully understand. We desperately need more research into SCARs.

9.    What has connecting with others affected by DRESS meant to you? 

Don't suffer alone in silence. When dealing with a life-altering event like DRESS, find a community to learn from and as source of knowledge and strength through difficult times.

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"All Hands on DRESS" is a call to action urging federal legislators to dedicate research funding to severe cutaneous adverse reactions (SCARs) like DRESS Syndrome. To date, zero FDA-approved therapies exist and no dedicated research funding is in place to help researchers better understand SCARs.

You can take action to help empower these efforts:

• Sign our petition to Congress, NIH, and FDA that urges for this funding.

• Write your members of Congress demanding that they take action to fund SCARs research.

• Read about Dr. Bell and Anna Marie's experiences with DRESS Syndrome.

• Share these blogs with your community and help spread DRESS awareness.

One small act can collectively turn into a movement. Together, we have All Hands on DRESS!