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What Patient Engagement Means to Me: Insights from a Patient Partner

Morgan Putbrese is a vocal patient partner with Vascular Cures. Born with a rare vascular condition, Morgan has spent several years building up a platform in order to raise awareness about her story and the importance of patient engagement and advocacy. Read about Morgan’s story and her perspective in her own words…

I have a complex vascular malformation called Klippel Trenaunay Syndrome or KTS. This affects my nerves, muscles, and veins from my left glute down to my knee. This syndrome is considered a rare disease with no cure. It can affect us all in different ways and leave different marks. My case is also most likely linked to Cowden Syndrome, the genetic mutation I have that causes vascular malformations. Also rare, and also no cure.

I was born with very limited muscle development in my left leg. My mobility is very weak in this area, and I have constant aches and throbs. I also have surface clots and venous implications, which affect my day-to-day. It wasn’t until these past few years, with weight lifting and swimming, that I have noticed a change and have been able to regain some strength.

Something I have learned throughout the years as a patient is that when faced with something progressive and rare, the mentality we have in facing these challenges is what can make or break us.

This process starts as soon as we walk out of the doctor’s door and into our own world as patients. Acceptance is a long journey for each and every one of us, but I strongly believe that how we choose to adapt is how we succeed in our treatment plans and life as patients. I am thankful for non-profits such as Vascular Cures. They see those like me and understand the medical necessity of us believing in ourselves as advocates, and they stand in the gap as an organization to aid in all vascular disease patients feeling they can handle this challenge and not just be labeled as having no cure.

I have had to seek medical care for my leg since birth, but I began a new treatment plan at the age of 21. My care team is multidisciplinary; I see two interventional radiologists, who go back & forth in my treatments. I also have a dermatologist and a certified lymphedema therapist and physical therapist to keep me doing the things I love. Outside of the hospital, my support is from my friends, my family (especially my mother who is my biggest advocate in this journey), and my faith. I’ve been blessed that through every event or goal I’ve set, and even in day-to-day life including my treatments and healing, these people have been there from the start and through every tear and ache.

My faith reminds me that there is always a higher purpose and something to my story to come, despite whatever season or challenge. I knew when things were more day-to-day for my condition, I wanted to make a “positive” of it and I wanted to use social media. That has opened my life to a choice of transparency. But this has also led to my path crossing with organizations such as Vascular Cures, that believe we are worth fighting for especially as patients of a primarily invisible disease, and I am truly honored to see the work they have done and what is ahead for communities of vascular disease patients.

Our bodies are already working extra with the complications of these diseases but something I do credit the majority of success in my treatment and in my journey as an advocate has been my belief in telling others what saved me. And that is to find what keeps you moving and getting up in the morning. Find your reason why, despite what the medical reports may show. Our conditions may limit us physically, but they do not have to mentally. That’s up to us. You have to see the light in you and in the situation and chase it with every ounce of determination in you. This is what I believe will lead to a better health care experience as well. Stronger patient advocates will directly result in improved communications with our providers, which is a medical necessity.

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