All Hands on DRESS: The patient perspective with Anna Marie and Elizabeth Harkins
- Deanna Lorianni
- Jul 14
- 5 min read
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 the story of a pediatric DRESS Syndrome survivor Anna Marie Harkins and her mother and caregiver Elizabeth, both from Oklahoma.
1. When did Anna develop DRESS Syndrome, and what drug(s) is believed to have caused her reaction?
Anna, our 18-year-old special-needs daughter with Epilepsy, had struggled with more than
a few adverse reactions to anti-epileptic drugs for nearly two years.
In July of 2025, we began to notice pretty significant issues with her most recent prescription, Lamictal and Onfi — a combination of two different medicines. By early August, she was suffering from what appeared to be some mental health/psychosis symptoms and was admitted for treatment at an inpatient facility. While she was there, they were continuing those two drugs and added both Risperadone and Zyprexa for psychosis.
Symptoms did not improve, and she began to present with a rash. They gave her Benadryl
thinking she was having reaction to one of the add-on medicines they prescribed, with little to no improvement. When she was discharged, we had more questions than answers. Within 24 hours of being home, she began to run a fever and the DRESS Syndrome rash became increasingly worse.
Within another 48 hours, we were in the hospital with a 103-plus fever, a hot and red rash, and increasingly evident edema. Within the next 24 hours, she was rushed to ICU with dropping blood pressure and still no diagnosis.
2. How long did it take to get a diagnosis? Did you face challenges along the way?
It took nearly six weeks and sweet Anna suffered with more misdiagnoses than answers. Once they diagnosed her with DRESS, her liver was hepatic, her kidneys were beginning to show significant signs of damage, and she was on oxygen. We were terrified.
There was only one physician in Oklahoma who had any knowledge of DRESS, and he was very honest with us that we needed to look outside the state for help long term. After two weeks in ICU and another in step-down care, we came home on a new antiseizure medicine and a long-term prescription for prednisone. They had removed all other medicines, including antipsychotics (We were told a few days into the ICU stay that this was absolutely not mental illness).
I could not find any physicians in Oklahoma City to follow her care, because they were unfamiliar with DRESS. Our pediatric neurologist, Dr. Amber Stocco, stepped in and managed her blood work, etc. and worked hard on Anna’s behalf to learn all she could about DRESS. If my neurologist hadn’t been willing to do the work, I don’t know where we’d be today.
By mid-October, Anna was down to 10mg prednisone a day and awakened with severe facial edema and the rash was back with a vengeance, coupled by sores on her skin. We went back to the hospital and were admitted for another two weeks as they tried to figure out what was causing the relapse. During this time, I followed up with Tasha Tolliver at the DRESS Syndrome Foundation, who was quick to connect us with Dr. Elizabeth Phillips at Vanderbilt University Medical Center. Dr. Stocco immediately made contact, and together they ordered lots of blood work, connected us with a dermatologist who was familiar with the skin issues associated with DRESS, and we were home by the first of November.
Unfortunately, by the end of November, she just wasn’t getting much better, still sleeping 18 – 20 hours a day. After consulting with Dr. Phillips again, we decided to try a five-day course of intravenous immunoglobulin (IVIG). We spent two weeks in the hospital for rehab and IVs, and the difference was significant. Her energy level increased, her skin began to improve, and by early February, she was finally able to wean off prednisone.
3. What has surprised you about caring for a loved one with DRESS Syndrome?
The very real fear of the damage this syndrome can cause and the long, long recovery. My daughter still has days where she is absolutely exhausted. And while it’s been a year, she is still seeing specialists (dermatology, endocrinology) to sort out the long-term side effects.
4. How has the experience affected you emotionally — during the illness and since?
Anna is still dealing with a great deal of fear. The medical trauma of the past year has really taken a toll.
As her mama, it’s devastating to see our children suffer. And the reality that so little is known about DRESS is very disconcerting.
5. What advice do you have for other caregivers with newly diagnosed loved ones?
YOU ARE THE ADVOCATE!
Do not accept “I don’t know” for an answer. Keep asking questions, keep pushing, keep researching.
Keep praying for significant funding to be put toward research and understanding of this terrible diagnosis.
6. What do you want the general public to know about DRESS?
In short, I want them to know that DRESS Syndrome exists! The “what-ifs” that inevitably creep in as a parent of a child with DRESS can be terrifying. To know that there are literally no physicians who have treated it in our home state was even more discouraging. The more that those of us who have been affected by DRESS can make every effort to speak out, the better hope we have of getting this disease the attention it deserves!
I try and take every opportunity to share our experience, and we are overwhelmingly thankful for the DRESS Syndrome Foundation, because I really believe we would be dealing with a very different “ending” to this story otherwise.
8. What do you want clinicians and researchers to know about having DRESS?
PLEASE LISTEN, accept help from those who know more and have researched more, and be willing to dig in to find what works for each individual patient.
GET THESE COMMON DRUGS OFF THE MARKET!
9. What gives you hope?
The DRESS Syndrome Foundation has our deepest devotion, and we will always be "cheerleaders" and advocates for its mission. THEY SAVED my little girl!!
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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. Shaquita Bell and Jeremy Sauer'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!
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