When Taylor Coffman went to give birth, she knew there would be risks and challenges, but she didn't expect to trigger a rare disease that almost killed her multiple times. Luckily she survived to be a mother and advocate for all patients.
Following our Rare Together podcast with Taylor Coffman about living with the aggressive rare disease atypical Hemolytic Uremic Syndrome or Complement-Mediated Pregnancy-Induced Thrombotic Microangiopathy, we asked her how to make rare disease voices heard on a larger and more lasting scale.
‘Rare disease voices need champions,’ said Taylor. ‘People who are suffering often have so much valuable wisdom to impart. Patients especially need to be amplified. Share patient voices and listen to patient stories.
‘Many people are afraid of illness and mortality, so they want to tune this content out, but the truth is, this is part of the human story. Everyone will be a patient at some point, so it's important to let patients play a leading role on the path to better care, better mental health resources, and better quality of life for all.’
Taylor, who lives in Santa Monica with her daughter and husband Zach Lupetin, a musician with Dustbowl Revival, worked as an actor on CBS’s ‘Life in Pieces’, Rachel Dratch’s ‘Late Night Snack’, HBO’s ‘Silicon Valley’ directed by Mike Judge and Ryan Murphy’s ‘Feud’ among others.
She worked for many years behind the scenes at Jimmy Kimmel Live, LA's NPR station KPCC, and in podcasting at LAist Studios. She has guested on many podcasts including Nicole Sciacca’s podcast Shock and Y’all about patient advocacy, redefining feeling healthy with a rare chronic illness, thriving with aHUS, and near death experiences.
She also founded 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.
Taylor became dangerously ill following the birth of her daughter two and a half years ago. She delivered her baby and then started to haemorrhage. She was rushed back into surgery, but didn’t wake up quickly from the anaesthesia, and there were concerns that she wasn’t going to make it. Many of her vital organs were impacted. She had kidney and heart failure, lung issues and they were concerned about her brain. Her nephrologist noticed that her platelets were extremely low, and contacted a haematologist who suspected the rare disease aHUS, which needed immediate medication to save her life.
‘Atypical hemolytic uremic syndrome (aHUS) is caused by tiny blood clots triggered by my complement system. So it gets a trigger, and your immune system starts attacking your own cells, and that disruption causes tiny blood clots that clump together to cause truly challenging blood clots. So I had blood clots all over my kidneys, in my heart, in my lungs, all over my pelvis, all through my baby’s cord and no one had previously noticed. Luckily, I got the medication and that saved my life, but it was pure chance I received my diagnosis. It depends so much on luck. If that doctor hadn’t been checking his emails on a Saturday, I wouldn’t be here today.
‘My treatment for aHUS or TMA (systemic thrombotic microangiopathy) has remained steady since I was stabilized early on. I get regular infusions. My kidney function has improved greatly. I went from full failure, to dialysis for about nine months, to getting off dialysis at about stage three kidney disease. I still struggle with kidney issues, but slowly I've continued to improve which is miraculous.
‘To be clear, just because I don't have a known gene doesn't mean it's still not genetic. Science may have more work to do. In a few years, I wouldn't be surprised if I come up positive. So, I always worry as a mother for my child having this disease too.
‘My life has changed massively since diagnosis. So much so I wrote an entire book about it. From career to health to identity, life was always going to be different after having a child, but for me it was change after change. I spent a lot of time trying to get my life back to the way it was before the baby and diagnosis, only to finally stop fighting the tide and realize there was no ‘going back.’ Now I embrace my hardships and spend a lot of time turning my lemons into Arnold Palmers.
‘While caregivers have a powerful role to play in advocating especially in the hospital setting, they've been the advocates all along traditionally, but for me, my husband Zach was always working hard on my behalf asking my doctors the tough questions, but fundamentally he couldn't be with me 24-7 because he had an infant to raise. Many patients have caregivers juggling responsibilities.
‘But some family and partners might have a difficult time stepping into this role too for so many reasons. Also family members often have conflict over decisions, which can be a huge challenge. That's why it's important for patients, who are aware, to use their voice. And for folks to have conversations or an Advanced Directive, so family know how to advocate in your best interest.
‘Ultimately it's a team effort. When I was unable to speak for myself, I surrendered to Zach and my medical team. And they did a great job. I don't think there should be too many unnecessary cooks in the kitchen, but everyone might have a piece of vital information needed for a good outcome. For me, my husband is educated on my illness so thankful if I was unconscious he has the language to help.
‘When you get these diagnoses, you have to remember that mental health care is part of healthcare. People can’t cope with these huge life changes alone and support is so important.
Post Traumatic Growth is accessible to anyone who's gone through trauma. Patients and caregivers alike. We don't get to forget, but we can reframe and build.
‘Having an effective resource for therapy is truly important for the whole family. A diagnosis effects the whole family unit - so it's important that everyone get the mental health care they need. Patient groups are profoundly important as well for creating a supportive community. But also friendships and extended family are vital - support the whole village. Don't isolate yourself. It helps to have connection. I'm eternally grateful for my entire network of love. They continue to show up in ways that lift my heart. And I hope to pay it forward.
‘As the patient with a rare disease we have the ‘lived’ history. We know when we feel different, worse, or better. We know what we've eaten and how our digestion is going. We know the journey of our bodies first hand - and that's a lot of important medical information we can provide our physicians. I urge people to not discount what they have observed in their bodies. No one else has that information like we do.
‘When I see new providers, I often have to give them the "cliff note" version of my illness. Folks with rare diseases often can't be passive, because we are our own best advocates.
‘One of the biggest challenges in living my life is the level of fatigue. I often need a power nap and plenty of sleep at night. I hit walls, despite being very productive and ambitious. Fatigue is often my most frustrating symptom practically speaking.
‘To be clear, I'm not a toxic positivity zealot. I am keenly aware of how unfair being a human can be. That said, one of my favourite quotes is by Anais Nin - "We don't see the world as it is, but as we are." And I think it's extremely true. Depression and diagnosis often go together - so it's important to not lose sight of good stuff.
‘I believe in tuning into joy. It's a point of view. It's a frequency we all have access to. Sometimes it's harder to see, especially in times of stress and pain, but living life is a spectrum and I urge folks living with medical challenges to not miss the beauty. We deserve to see it.
‘I'm incredibly strong. I've been through very hard times. I've survived in the face of enormous fear and stress. I live in the moment, yes, and I do have fears - but I know I can only control so much. I suppose I walk in hope, as opposed to walking in fear. The scenery is much more pleasant.’
Read more about Taylor’s story on Rare Disease Girl Substack. Follow her on Instagram at @taylorcoffmanmade
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You can listen to, or watch our Rare Together podcasts on Spotify, Apple or YouTube here: https://lnkd.in/e8TFYBme