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In Honor Of...

RFA is dedicated to patients and caregivers who advocate for themselves and others by their commitment to end desmoid tumors.

 

Join us at RFA to celebrate them, their families and their teams.

In honor of Sofiah

 

What was the turning point in your journey with desmoid tumors?

The turning point along my desmoid tumour journey was when I decided to share my story and connect with others on social media. I went pretty quickly from feeling alone in the fight, to connecting and sharing experiences with other amazing people going through the same journey. 

 

From the fantastic Desmoidian Facebook group, to the regular updates I receive from the Desmoid Tumour Research Foundation by email and on Facebook - I am much more informed and really value being able to support others through my lived experience. 

 

I would love one day to attend the patient meeting and take part in Running For Answers - i am just geographically restricted living in Australia.

 

In honor of Christina

My road to diagnosis began in January 2017. As a yoga enthusiast and teacher, I noticed a decreased range of motion in my right shoulder during my practice. When physical therapy and an unsuccessful surgery left me with more questions than answers, I sought the help of doctors at the University of Pennsylvania. In February 2018, I was diagnosed with a desmoid tumor in my right chest wall. Though my treatment has been complex and demanding, the support from my family, friends, and coworkers has been extraordinary.

 

I have made it my mission to educate others about my story and diagnosis. I frequently update my blog Girl Meets Cancer to connect with other patients, inform readers of my triumphs and challenges, and crack jokes whenever possible. While the diagnosis is challenging, I truly believe there is hope, and I'm so grateful for the work of DTRF and its supporters.

 

In honor of Alexa

In May 2014, I had an appointment scheduled with my doctor regarding a recent finger surgery. I mentioned having a lump in my right hip since he was my orthopedic doctor. They said it was a fatty tissue and sent me to physical therapy. About 2 years later, I began having a lot more pain and I was no longer able to sleep on my right side. As the pain progressed over a year, my mom finally scheduled an appointment with the same doctor. He scheduled an MRI and they saw a tumor in April 2017. I visited UW Madison for a biopsy where I was diagnosed with having a desmoid fibromatosis. They told me radiation was the best option. As we began to further our researcher, radiation was not the best option considering I am only 17 years old. We met with Froedert Hospital in Milwaukee in June 2017. I was scheduled for cryoablation one week later. I am currently 3 weeks post-op and I only have pain to touch. The journey has been tough, but I have been able to remain positive. The hardest part of the whole journey is not knowing what is going to happen next. Many friends and family members do not realize how hard it is to live a normal life. Constantly being in pain and not being able to walk without a limp make life difficult. I still manage to work 25+ hours a week and participate in various school activities. I will be graduating in May 2018 and attending college the following fall. I will not let my desmoid stop me from my dreams.

 

In honor of Melinda

My desmoid journey started in December of 2015.  I have witnessed some of the most gracious acts of kindness and I’ve realized I’m surrounded by a huge net of support in my life. I have my husband, family, and friends who are present sitting in waiting rooms, going to appointments, visiting me in the hospital, and even my nurse friend who stayed after her shift to be there when I awoke from surgery. They don’t ask if I need them there, they are just present. The generosity we’ve seen include those who help out with watching my girls, making us food, and gifting us with things that make our lives easier, and those who generously helped me get to the patient meeting. I have been humbled by the number of people that are simply caring souls. They check in with us, and help out where they can.  I’m lucky to be surrounded by love, and I don’t take it for granted.

 

In honor of Tiffany

When I was first diagnosed with desmoid tumors in 1992, there was hardly any information about the disease available to physicians or patients. I had support from family and friends, but I felt so isolated and helpless because I was always taking a shot in the dark when it came to treatment options. Then, in 2005, I discovered the desmoid tumor list serve and was able to communicate with other patients via the web and in person! The DTRF opened up a world of opportunity for people with desmoids to connect with each other, connect with knowledgeable physicians, and begin to make informed decisions about care and treatment. Today, the DTRF is funding their own studies for finding a cure for this crazy disease! It fills me with joy and hope that we have come so far in just 25 years! A cure is right around the corner. I am sure of it!

 

In honor of Tamara

My Desmoid journey began Christmas of 2016 with surgery, then a diagnosis of Aggressive Fibromatosis in late January of 2017. Surrounded by friends and family, my initial priority was to help them through the shock and confusion unique to a Desmoid tumor diagnosis. By spring, this priority shifted to the inevitability of facing this new reality myself.

 

While endlessly Googling all things “Desmoid,” I came across (the first of its kind) retreat in Virginia called, “Healing U Women’s Wellness Weekend,” for women with Desmoid tumors. I went from clinging to a binder full of articles about Desmoids to belonging to a healing community of women I now think of as sisters, sharing my battle with this disease. We are there for each other no matter what and are in this journey together.

 

Remember: You are not alone.

 

In honor of Gloria

Over 14 years ago, Gloria was diagnosed with Familial Adenomatous Polyposis (FAP), a genetic disease that causes polyps to form in the large intestine that can eventually become malignant. This condition can also cause one or multiple desmoid tumors in the body, typically in the abdomen.

 

A few years after a tough recovery from surgery to remove part of her large intestine that had polyps, Gloria was rushed to the ER in excruciating abdominal pain and had emergency surgery for a bowel obstruction. An intra-abdominal desmoid was found to be the source of the problem. In the next few years, the inoperable desmoid continued to grow and eventually ruptured her bowel, causing her to contract sepsis and go into septic shock. Gloria found herself fighting for her life against the infection and blood clots.

 

Thanks to the expertise of her doctors and nurses, and the unwavering love and support of her family and friends, Gloria won her battle. But as long as she continues to have her desmoid, she knows the fight is not over. She has dreams of someday becoming a Registered Nurse, but the daily pain she experiences from her desmoid has put those plans on hold. “I am just someone who is doing all I can to keep fighting and hopefully one day be cured and rid of this disease. I am grateful to be a part of this desmoid family. We are a unique bunch but we all fight together and feel the pain of those we lost all together,” Gloria told us recently. She just prays none of her loved ones will have to endure what she has been through.

In honor of Alex

Ten-year-old Alex has spent too much of his young life battling a desmoid tumor. Lucky for Alex, his mom is Dr. Kelly Mercier, a metabolomics research scientist who understands the complicated nature and terminology of having and treating a rare disease.

 

She has also made sure that Alex understands as much as possible about his own disease. Personally invested, Dr. Mercier is lending her skills by collaborating with other researchers and doctors at the DTRF International Researcher Workshops. She is also the lead investigator for DTRF’s Natural History Study, what will be the first patient registry solely for desmoid tumor patients.

In honor of Sherrie

Sherrie, a wife and mother of 3 living in Utah, was diagnosed with a desmoid in her lower back shortly after giving birth to her third child in 2006. After years of living with her desmoid and struggling alone, Sherrie came across DTRF on Facebook.

 

Her desire to help other patients connect and support each other lead her to eventually become the volunteer co-administrator of the desmoid patient support Facebook group, The Desmoidian.

 

Today, 10 years after her diagnosis and 2 treatments and 5 surgeries later, Sherrie still lives with her desmoid. Despite this, she mountain bikes, hikes and runs and is active with her children. “I haven’t let desmoids stop me. It’s a part of my life, it’s something I have to live with and I’ve learned how to just manage it and do the best that I can,” said Sherrie, during her address at the 2016 DTRF Patient Meeting.