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Why Some and Not Others?

CEO Leah Howard, J.D., shares some thoughts and questions on why certain people develop disease or illness.

Earlier this summer, my Independence Day holiday weekend ended with a trip to the emergency room (ER) in the early morning hours of July 5. Good news, the patient is now doing well! And fortunately, it was not a fireworks malfunction that sent us there. We have had close calls with sparklers and now know better. The culprit was a respiratory virus that landed my 18-month-old in the ER. Once she was assessed, received a breathing treatment, and had an hour of monitoring to confirm improved respiration, I started thinking about how we ended up there and the interesting connection this visit had to my work as President & CEO of the National Psoriasis Foundation (NPF).

Friday July 1, she came home from daycare with a bit of a runny nose. She spent most of the weekend playing happily but was not herself come Monday. After a few restless hours of sleep, I felt we should head to the ER. Past experiences with her sisters’ respiratory viruses taught me to trust my gut when it comes to breathing difficulties.

As a mom of seven, there are not many common illnesses that have not passed through the Howard house at one time or another. Along the way, I have learned tricks on how to give baby medicine through a syringe and actually get them to take it (give a little puff of air in their face and their swallow reflex will kick in and they will swallow the medicine), manage a fever, calm a cough, and other ways to relieve common occurrences experienced by children when they are not feeling well. Generally, these tricks work and the patient is back to themselves in a few days. But every now and then, a visit to the pediatrician or ER becomes necessary. In some very scary circumstances, you leave the pediatrician’s office in an ambulance or the community hospital your child was admitted to decides she needs to be Life Flighted to a major academic center. I can tell you there are no tricks to prepare Mom or Dad for those moments.

 

Back to this daughter’s illness, though, and the connection it had to the work of NPF. In May and June, NPF and our community partner, Twill Care (formerly Kopa), joined one another’s podcasts for conversations about how the work of the two organizations to support individuals living with psoriasis and PsA. First, Theo Ahadome, a Senior Vice President at Twill Digital Health Solutions, joined NPF Psound Bytes™ episode 165 Psoriasis and Mental Health: Why Digital Therapeutics Should Be In Your Care Plan to share how Twill provides free digital care tools for people with psoriasis and psoriatic arthritis, including community support, access to advice from experts, and symptom trackers to help meet their mental and physical health needs. Then in June, I joined Dr. Murray Zucker and Theo on Charting a New Course: Transforming Psoriasis Outcomes for Patients (S1E19). We talked more about the partnership between NPF and Twill Care, the challenges of living with and managing psoriatic disease, and the opportunities for individuals living with psoriatic disease to improve their health outcomes using the tools and resources offered by NPF and Twill.

As the conversation was wrapping up on Charting a New Course, Dr. Zucker asked me and Theo to share our worst health care experience, our best experience, and what we would change in health care if we had a magic wand. I shared my worst experience – that Life Flight conversation, my best – health practice innovations that have enabled more patient-centered care, and my magic wand desire – to solve access to care issues.

So ironic that less than a month later, I was back in the ER with a different daughter dealing with those same breathing issues. Fortunately, we were at a major institution with the equipment and tools to treat her. And clearly, her issues were not nearly as severe as her sister’s had been. What I am fascinated by, is why it is my four daughters that have all ended up at the ER with breathing issues, and none of my three sons. They have surely had the same viruses. But for whatever reason, the viruses have not impacted them to the same degree. It is a lot like psoriasis.

My experience with the disease is different than yours, and the next person in our community. That got me thinking about these nagging questions:

  • What causes the disease to progress in one individual, and not in another?
  • Why does one member of the community respond to a therapy, only for it to not work for someone else?
  • How can one therapy work for one of us for years, and for someone else the effectiveness of the treatment wanes after a short time?
  • Why does one twin develop psoriasis and the other not?

My hope is that through NPF-funded research including the $3.2M in awards announced this July, we will find answers to these questions. In the meantime, addressing the whack-a-mole dynamic of today’s health care system is a must. Only when providers can reach into their toolbox and pull out the right therapy for that patient, do we have the ability to create a more personalized health care experience. That is what I needed, and got, for my daughter at the ER.

That is my wish for all my children – a health care system that accounts for them as individuals and supports them in achieving their best health outcomes. And that is my wish for the psoriatic disease community. We can end the burden of chronic disease. It requires teamwork, a spirit of innovation, and investment to make it happen.

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