The DRESS Syndrome Foundation

DRESS in the News! An article featuring DRESS and interviews with our founders, Tasha Tolliver and Nancy Szakacsy, as well as our scientific advisor, Dr. Elizabeth Phillips, and other experts, has been published by the Washington Post. To read the article, click on the link below.

Their acne medications set off a rare chain reaction that killed them After losing their daughters to DRESS Syndrome, two mothers work to raise awareness of the rare but deadly drug reaction.

Did you miss National DRESS Syndrome Day? Want to revisit the patient stories and medical facts?

Check out our website where you can:

👉 Learn facts about DRESS Syndrome
👉 Discover new findings about how our genes can play a role in who gets severe drug reactions
👉 Hear what matters to patients in their diagnosis and recovery

And more!

National DRESS Syndrome Day | DRESS-Syndrome National DRESS Syndrome Day on July 16 brings awareness to the severe adverse drug reaction, DRESS Syndrome.

It takes a community to make a difference!

Thanks to everyone who united today for DRESS Syndrome to share your valuable knowledge and experience.

Hearing medical and patient voices helps to broaden our understanding of DRESS. With each story, we become much closer to preventing and properly treating this disease.

Together, we can create a world free of severe drug reactions!

Joel Pickett is a constant advocate for DRESS awareness. He has lived experience with this disease and generously supports other who are afflicted. Thanks for sharing your voice for DRESS, Joel.

National DRESS Syndrome Day | DRESS-Syndrome National DRESS Syndrome Day on July 16 brings awareness to the severe adverse drug reaction, DRESS Syndrome.

Remember to nominate your 2024 DRESS Hero!

Who made a difference in your DRESS diagnosis, treatment, or care?

Our annual DRESS Hero awards event recognizes medical experts who excel at treating and caring for patients with DRESS Syndrome.

Let’s take time to celebrate their heroic efforts.

Nominate your DRESS Hero today!

Entries close at midnight, Pacific time. https://www.dresssyndromefoundation.org/dress-hero

Educating the next generation of doctors about severe, adverse drug reactions is essential to furthering understanding of DRESS Syndrome.

Emma’s research contributions on DRESS are already having a tremendous impact on our knowledge of this disease.

Medical students, like Emma, give us hope that progress will continue on DRESS diagnosis and treatment.

Thanks for sharing your voice, Emma!

Mari is trying to get back to the life she so enjoyed before developing DRESS Syndrome.

She has had a prolonged and challenging recovery from DRESS. With multiple relapses and ER visits, she has had to become an expert at advocating for herself.

Finding the support of those who understand what she’s going through has been key to Mari’s recovery.

We wish her continued healing.

Thanks for sharing your voice, Mari!

Today, doctors can test patients to identify if they’re at risk of developing DRESS Syndrome to some drugs.

Having a genetic risk factor can increase a person’s likelihood of getting sick from a specific drug. And these factors can vary by ethnicity.

Currently, we know some of the Human leukocyte antigen (HLA) genetic risk factors for DRESS to drugs like:

Allopurinol: HLA-B*58:01
Carbamazepine: HLA-A*31:01
Daspone: HLA-B*13:01
Phenytoin: HLA-B*53:01
Vancomycin: HLA-A*32:01

Simple, low-cost genetic testing is available for some DRESS drugs. But, they're not yet widely used by medical providers.

We encourage all medical providers to be aware of the genetic tests that are currently available. Using these tools, both when prescribing medication and when working to identify a patient's DRESS-causing drug could help prevent cases and improve outcomes.

To learn more about drugs that cause DRESS, visit our website: https://www.dresssyndromefoundation.org/drugs-associated-with-dress

When getting a diagnosis, Jayla was fortunate to have a family member who knew what DRESS Syndrome was and could help her medical team.

She understands that many people don’t have an informed advocate already on their side. And every day counts when you’re suffering from a severe drug reaction.

Waiting for a diagnosis and treatment from a relatively unknown and life-threatening disease like DRESS is scary for many patients.
�We’re thankful for all medical providers, loved ones, and friends who stand up for DRESS patients when they need them most.

Thanks for sharing your voice, Jayla! https://youtu.be/tVNw4jzNUqs

Jayla on National DRESS Syndrome Day 2024 2024 National DRESS Syndrome Day is July 16!This year's theme: Voices for DRESSDRESS Syndrome patient Jayla shares her thoughts on the importance of awarene...

“It is important to develop interdisciplinary education and communication strategies in the medical community about DRESS Syndrome. The objective is to have an early diagnosis and correct treatment to improve the quality of life of our patients.”

Dr. Cavallo is one of our DRESS Heroes! In 2023, one of her patients nominated her for the excellent care she provided.

Diagnosing and treating DRESS early in the course of illness can be life-saving.

We’re grateful for doctors who not only recognize DRESS symptoms but stick with their patients through their full recovery.

Dr. Cavallo continues to speak out and educate about DRESS, helping others to survive this illness.

See her TV interview today (in Spanish) along side DRESS patient advocate, Laura Sollier!
Begins at 2:12 marker:
https://www.youtube.com/watch?v=iEGUMwFvNZA

Or, read about it here: https://www.elonce.com/secciones/sociedad/808965-sndrome-de-dress-la-afeccin-rara-y-grave-que-causa-la-ingesta-de-medicamentos.htm

Thank you for sharing your voice, Dr. Cavallo!

DRESS Syndrome is a complicated experience, no matter who you are.

Dr. Ryann has learned firsthand that advocating for yourself — even as a health care provider — is challenging.

And like many DRESS patients, she feels the isolation and frustration that come along with having a relatively unknown disease.

Once a patient’s rash resolves, they may still be experiencing many health issues that aren’t obvious by looking at them.

Understanding this aspect of DRESS by a patient’s medical team and loved-ones goes a long way in supporting their recovery.

Thanks for sharing your voice, Dr. Ryan!

Dr. Dodiuk-Gad has a message for the medical community about the factors to look for when diagnosing DRESS Syndrome. She reminds us to “always think about DRESS and have it your differential diagnosis.”

A leading global expert on DRESS and other severe cutaneous adverse drug reactions, Dr. Dodiuk-Gad has been educating the medical community and providing extraordinary care to DRESS patients for many years.

We’re grateful for her hard work in advancing knowledge of this disease.

https://youtu.be/uWICuuLml3E?si=pvf21-wwT4I2Vh_t

Thanks for sharing your voice, Dr. Dodiuk-Gad!

National DRESS Syndrome Day 2024 with Dr. Roni Dodiuk-Gad National DRESS Syndrome Day 2024This year's theme: Voices for DRESSDr. Roni Dodiuk-Gad is sharing her voice about DRESS Syndrome! Hear the message she has fo...

The most common core treatment for DRESS Syndrome is corticosteroids.

These steroids may be necessary to calm symptoms and prevent organ failure. Steroids are usually taken for a long course that can last for 6 – 8 weeks, or much longer in some cases.

However, all patients are different. And steroids alone do not work for some patients. In this case, they may receive other medications to help support them through their recovery.

Be aware: Tapering off steroids too fast can cause a patient to relapse, and a return of initial symptoms or new symptoms can occur.

Even if a patient’s rash has cleared, their blood and organs can be affected during a relapse. A slow and carefully monitored steroid taper is important!

Sophia understand how DRESS Syndrome patients can face different long-term effects.

In her medical research, she’s closely tracking DRESS patients to deepen awareness of DRESS’s lasting effects.

She shares her knowledge long-term effects can continue and even worsen over time, physically and psychologically.

As a result, medical teams should closely monitor DRESS patients.

We’re grateful to the new generation of medical providers who are working hard to understand and treat DRESS.

Thanks for sharing your voice, Sophia!

Fighting through her illness with DRESS Syndrome was a tough battle for Esther.

From finding doctors who could understand and treat her condition to experiencing many health setbacks, she almost gave up hope for full recovery.

Recovery took a few years, but she’s now healthy, back to doing what she loves, and educating others about this disease.

Her story is an inspiration to us.

Thanks for sharing your voice, Esther!

Experiencing DRESS Syndrome took a huge toll on Bobby, both physically and mentally.

We often focus on the physical effects of DRESS — but the emotional struggles are real and can be ongoing. Many patients can feel isolated and misunderstood.

Developing a fear of not recovering, taking other medications, and dying are just some of the struggles DRESS patients face daily.

Thanks for sharing your voice, Bobby! https://youtu.be/8E0_gZACktA

Bobby Dillon on National DRESS Syndrome Day 2024 2024 National DRESS Syndrome Day is July 16!This year's theme: Voices for DRESSDRESS Syndrome patient Bobby Dillon shares the difficulty of having DRESS from...

It’s estimated that 16% of DRESS patients will go on to experience long-term complications like autoimmune disorders. These conditions can develop months to years after a patient recovers from their initial symptoms of DRESS.

Some of the more common long-term complications of DRESS include:

Alopecia areata
Fulminant + Type 1 diabetes
Hemolytic anemia
Myocarditis: hypersensitivity, acute necrotizing eosinophilic myocarditis (ANEM)
Psychiatric Conditions: anxiety, depression, PTSD
Recurring skin eruptions
Rheumatoid arthritis
Thyroiditis
Sensitivity to other drugs
Systemic lupus erythematous
Viral reactivations

Doctors need to follow and monitor their patients for a long time.

We believe a world free from severe drug reactions is possible.

While a dedicated global team of medical experts are researching DRESS, it remains relatively unknown and misunderstood.

Here are a couple steps you can take to help support our mission of eliminating severe drug reactions:

👉 Register your case of DRESS Syndrome.

US-based patients, loved ones, and medical experts can register DRESS cases with the government through the FDA. Doing so helps accurately track how many people develop DRESS, including how many die from this disease. This directly affects how the government addresses medications that are on the market. Right now, DRESS is greatly underreported.

You can also register your case with our Foundation. This registry connects you to medical studies you can choose to participate in with our partner medical organizations. Studies on genetic factors are ongoing, and we’ll keep our patients informed.

Learn more about case registries and register: https://www.dresssyndromefoundation.org/dress-syndrome-resources-education

👉 Do genetic testing for DRESS–causing drugs.

Low-cost, easy-to-use tests exists for some drugs that cause DRESS. Taking these tests before any prescription can greatly prevent cases of DRESS Syndrome.

Medical providers, be aware of the genetic tests that exist for the following drugs:
Allopurinol
Carbamazepine
Daspone
Phenytoin
Vancomycin

Patients, ask your doctor if tests are available before you take these drugs.

Little steps go a long way in preventing and addressing DRESS!

For over a decade, Dr. Blumenthal has been treating DRESS Syndrome patients and researching this life-threatening illness.

From this experience, she’s gained important awareness of how DRESS affects patients long after recovery. And a fear of taking all medications significantly and commonly impacts people’s lives.

These lasting effects of DRESS deserve attention so that people can recover physically and emotionally — and live without fear of a relapse or long-term complications.

Thanks for sharing your voice, Dr. Blumenthal! https://youtu.be/aaei-FtNi3A

Dr. Kimberly Blumenthal on National DRESS Syndrome Day 2024 2024 National DRESS Syndrome Day is July 16!This year's theme: Voices for DRESSHear from Dr. Kimberly Blumenthal from Massachussetts General Hospital as she...

Who’s your 2024 DRESS Hero?

Our annual awards event recognizes medical experts who excel at treating and caring for DRESS Syndrome patients.

Patients and loved ones can nominate as many people as they want: dermatologists, physicians, surgeons, or other medical professionals.

Entries close today at midnight, Pacific time

Nominate your DRESS Hero today:
https://www.dresssyndromefoundation.org/dress-hero

As a DRESS Syndrome researcher and physician, Dr. Kaffenberger knows it takes a multidisciplinary team to timely and accurately diagnose DRESS.

DRESS affects the whole body including, blood, skin and multiple organs.

Collaboration among all involved medical specialists helps to avoid a late diagnosis — and can improve a patient’s recovery success.

We appreciate Dr. Kaffenberger and the dedicated team at The Ohio State University Wexner Medical Center for their ongoing contributions to understanding DRESS.

Thanks for sharing your voice!

For Joanne, knowing about her family’s genetic risks for getting DRESS Syndrome from Vancomycin is reassuring.

This information can help them avoid exposure to this antibiotic and potentially prevent DRESS.

Vancomycin is a common trigger of DRESS Syndrome. And it’s one of the few drugs we have good evidenced-based information for regarding genetic risks.

Doctors can do an easy, low-cost test to confirm whether someone carries this genetic marker (HLA-A*32:01).

Thanks for sharing your voice, Joanne!

“DRESS Syndrome taught me that, as a patient, I have the right to comprehensive and interdisciplinary medical care and, as a person, I should enjoy life every day, because it can change at any minute.”

For patients with DRESS Syndrome, life can change within what seems an instant.

Laura’s experience with DRESS opened her eyes to the complete care patients require and deserve when overcoming life-threatening illnesses.

She also found a reminder to live life to its fullest, an inspiring note that can help anyone overcome dark moments.

See Laura and her doctor, Cecilia Cavallo on a TV interview (in Spanish) about DRESS today! Begins at minute marker 4:40. https://www.youtube.com/watch?v=V8jcsr9yK3c

Or read about it here: grave-que-causa-la-ingesta-de-medicamentos.htm

Thanks for sharing your voice, Laura!

Identifying genetic risk factors for severe, cutaneous, adverse, drug reactions (SCARs) like DRESS Syndrome will help prevent this disease.

Dr. Krantz is a leading scientist working on this important research. His contributions to drug safety are enormous, and we can’t say thank you enough!

And thank you to all DRESS patients and families who have participated in research, helping to further understanding of this complex disease.

Thanks for sharing your voice, Dr. Krantz!

Your genes may make you more at risk of developing DRESS Syndrome.

Some people carry genetic markers to a specific medication that put them at risk for DRESS and other severe, adverse, cutaneous, drug reactions (SCARs). To date, we know only a handful of what those genetic markers are.

Researchers and scientists are making great progress at identifying more of the genetic variants. Known as HLA (human leukocyte antigen ), these markers are associated with SCARs like DRESS and Stevens Johnson Syndrome/Toxic Epidermal Necrolysis (SJS/TEN).

This knowledge will help medical teams both diagnose and prevent future cases of these severe drug reactions.

To learn more about the known gene/drug associations, see our webpage: www.dresssyndromefoundation.org/drugs-associated-with-dress

Hear this message to the DRESS Syndrome community from our Co-Founder Nancy Szakacsy.

Nancy has been working to support DRESS patients in their time of crisis and beyond for over 12 years.

She understands, from her own lived experience with her daughter’s illness and loss to DRESS, how frustrating and isolating this experience can be.

We are grateful for all those she’s helped and for her enormous contributions to the Foundation. https://youtu.be/p01LBbSurb8

Nancy Szakascy on National DRESS Syndrome Day 2024 2024 National DRESS Syndrome Day is July 16!This year's theme: Voices for DRESSHear DRESS Syndrome Foundation Co-Founder Nancy Szakacsy share her words of ho...

Rachel is a healthcare provider who lost a loved-one to DRESS Syndrome.

Since then, she’s become keenly aware that DRESS requires a team in order to best help patients and address its complex nature.

For this reason, it’s important for medical providers to collaborate closely — with medical teams and with patients and their families.

Thanks for sharing your voice, Rachel!