LDA Research talks to Rare Disease Girl Taylor Coffman, about action and advocacy for patients worldwide with rare diseases, in support of Rare Disease Day 2025.
Taylor Coffman had to think fast to survive, following the birth of her daughter, which triggered the aggressive rare disease atypical Hemolytic Uremic Syndrome. Despite the great team of doctors battling her multi-organ failure, her life hung in the balance. Frightened and in pain, she knew she had to remain lucid enough to project manage her own care and advocate for herself if she was going to make it.
Listening to the voices around her trying to work out what to do, she suddenly realised that each doctor was working independently. If she was to have any chance at all, they needed to talk to work together.
Fortunately, her nephrologist noticed her platelets were extremely low, and texted a haematologist for advice. He immediately suspected the rare disease aHUS, where the immune system attacks its own cells, causing tiny blood clots to clump together into large, life-threatening clumps. ‘Thanks to that haematologist I received lifesaving medication. Quite literally a text chain saved my life.’ Taylor says.
Three years later, the former actor, writer and producer who lives in Santa Monica with her daughter and musician husband Zach Lupetin believes she was saved for a reason – to educate others on the vital importance of patient advocacy.
Her emotive post detailing how she advocated for herself in the ICU and her subsequent journey recently reached No 1 on Huffington Post ahead of Joe Biden and the NFL Super Bowl. Her message is clear – we need to play a role in our own healing and healthcare. ‘You are the CEO of your care. I used my voice, and I was on the team.’
When people contact her for help and advice, she provides them with resources to study, encourages them to join patient groups, and also sends hope.
‘I do think some of the most important health conversations are happening outside of the doctor’s office. About pathways to care, quality of life, and the choice to stay on a medication that’s got terrible side effects. Patients in these communities are checking each other’s notes, what protocols they are on, the labs they are getting, almost double-checking the path of care. Reaching out and leaning on communities is a powerful tool.’
She disagrees with the idea that you shouldn’t Google your symptoms saying that you should make online resources a part of the information path. ‘I say to my doctor, “I’m going to Google this, where do you want me to go? What resources do you want me to look at?”’
While a lot of resources are often above our heads, she suggests taking things to show doctors and asking for an explanation.
‘I believe in science and I believe in their training and experience. But after everything I went through, I now know there are ways patients can better support our providers, and I know that engaging with them and playing an active role in our care is not only vital – it can mean the difference between life and death.’
If she wants a test or procedure that a doctor doesn’t agree to, she asks them to annotate her request in the notes, ‘Written records have weight’, she said. She also often asks medical professionals if it’s ok to record the appointment using her phone’s voice memo recorder, because patients can often be overwhelmed by all the information they’re receiving.
‘My current doctors are invested in my care and I like them all. But, at the end of the day, it’s a relationship based on their ability to keep me well. If I don’t see progress, I get a second opinion, and it’s ok if they know that. It’s not personal.’
Research shows being an empowered patient can improve health outcomes. ‘I respect boundaries and I’m kind, but I’m insistent.’ Taylor’s advocacy takes her back to the hospital as a Patient and Family Services volunteer. She said, ‘For me it’s a hands-on experience of what I do online, but it’s much more personal. Walking into these rooms is a lesson in the unexpected. I try to assuage stress and help them navigate the hospital experience especially around costs and care.’ She offers practical medical advice, for example, ‘If you are beginning ambulatory care following an operation, you’ll need the proper pain management to do this. I’ve witnessed so many meaningful scenes of healing. Some of us go earlier than others, but we will all be patients, this is part of the human story. I am so grateful to be there for people on the days that maybe life is difficult, and I believe it’s a privilege.’
Taylor speaks out about the uniquely female experience of getting a diagnosis and dealing with healthcare professionals. ‘To ignore the reality of unconscious or conscious bias is to ignore a great deal of the factors around diagnosis,’ she said. ‘I think there’s a need for training around when a woman comes in talking about symptoms. One woman I spoke to said that she went to the ER, was sent home, and had to call 911 to be taken seriously.
‘A 2009 study showed middle-aged women with the same heart disease symptoms as men were twice as likely to be diagnosed with a mental health issue. There’s plenty of stats that show women have to wait longer for care, and when we look at the realities of rare disease, diagnosis takes so long. Rare disease are rare, but in the aggregate they’re not rare at all.
‘I’m also very pro women doctors. The stats show women surgeons have less fatalities than their male counterparts. I also think the more diversity you have on your team makes a difference. ‘I feel deeply passionate about speaking out about funding, especially in the States. Access to quality healthcare is a true challenge.’ She describes how a lot of people with rare diseases, who don’t have the means can’t always stay there, because they would go bankrupt. ‘I do think that this is a big problem, and even between insurers here, the discrepancies between costs are wildly dramatic. I don’t believe any system is perfect, but no one should go bankrupt because they have a rare disease. I think that is part of my advocacy in the future. When my daughter goes to elementary school, I would not be surprised if I ran for office.’ Taylor writes the Rare Disease Girl Substack, a weekly newsletter sharing her insights and journey with a chronic rare disease, as well as navigating health systems and coping with medical catastrophes. ‘I started the Substack to fast track a community aspect. I wanted to start getting into people’s inboxes and being there for them in a way that felt more immediate,’ she said.
She is also writing a book and received an offer for publishing, but she and her agent and shopping around seeing what is possible. It was while she was in dialysis that Taylor was inspired to write about the experience while she was living it. ‘I didn’t know of a book that was going to help me in this situation, so I was like, I’ll just write it.’ She described her style as inspiring and real, as well as practically helpful and funny. ‘When you are sick, the idea of reading a book is exhausting. So, I wanted to write something for patients that they could just check in on, an easy ready. I also wanted people to laugh and to feel supported.
‘Writing gives me purpose. Before all this I didn’t have a purpose beyond my own ambitions. Whereas now I am really driven to help people. It also works as what I call exposure therapy. I went through a significant amount of trauma, and by re-visiting those scary moments in time, it allows me a level of post traumatic growth. So that is extremely rewarding.
‘While my experience was a roller coaster, I did find my voice in that hospital bed. I learned the importance of advocating for my needs and, most crucially, to trust myself when something is wrong. ‘I really appreciate how LDA Research tries to elevate voices and further the advocacy around rare diseases. The diseases themselves might be rare but the population of people with rare diseases is not that rare.’
About 300 million people around the world have rare diseases. A huge population affecting a lot of people. So Rare Disease Day, these advocacies and the work that Taylor is doing are crucial for those people.
LDA Research is an international medical marketing research company renowned for recruiting hard to reach respondents. https://ldaresearch.com/
Read more about Taylor’s story on Rare Disease Girl Substack. Follow her on Instagram at @taylorcoffmanmade
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