Lilah

When Lilah was two, a tumor started growing in her wrist. After surgery, the pathology came back as a desmoid tumor. Although the surgeon had clear margins, the tumor grew back twice as big a few months later. Lilah is eight now and her desmoid is still in her wrist, but it has remained stable.

“I get nervous wondering if or when it will grow again, and what might happen with my desmoid in the future. It’s in the wrist of the hand I write with, and I love to write and draw and do acro and tumbling, so I hope that it won’t prevent me from doing what I love someday.”

Priscilla has struggled with desmoid tumors for over 12 years. The first one in her armpit and scapula area was 25×20 cm and was surgically removed. She went six years without a recurrence, but in 2020 doctors found three new tumors in the area. Her tumors have stabilized and she continues to follow up with an oncologist. Although she doesn’t experience pain most days, she still has some pain local to the site of the tumors.

“Patients with a desmoid tumor suffer from chronic daily pain (apart from irreversible damage), and only we know and feel what it is like. True family and friends support in the best way – giving love, affection and shoulder to cry on when everything seems to fall apart – but there are still people who judge it as something unimportant because it is not considered malignant.”

Gerald says his desmoid tumor journey began with “literally a pain in the neck.” After seeing a lump on his left shoulder, he went to urgent care the next day and was told it was a lymphedema and “nothing to worry about.” But the pain wouldn’t go away. An MRI left more questions and Gerald was sent to a surgeon for removal. The pathology revealed it was a desmoid tumor. Unfortunately, the tumor grew back in four months and was removed a second time. It grew back for the third time. Fortunately, after undergoing treatment, the tumor has disappeared.

“Having this condition has left me feeling alone due to the medical professionals not really knowing what to do. However, with prayer and complete trust in God, I know I will get through this journey!”

Sharp pain and a lump in the left lower abdomen area led Paola to visit a doctor while studying in Florida, US in June 2020. It wasn’t until October that she had an MRI that confirmed a 4.5 cm mass in her abdominal wall. She was initially misdiagnosed with metastatic cancer, but after surgery the pathologist determined that it was a desmoid tumor. The surgery also revealed that there were actually two tumors in the same area. An MRI in August 2021 confirmed that the surgery was a success and Paola is currently tumor-free.

“Although I am currently living tumor-free, I understand that there are high possibilities of recurrence and that the recovery from surgery has been long and sometimes challenging. This is the reason why I still hope for a definite cure for desmoid tumors.”

Dakota received her B.A. in biology from Bryn Mawr College in May 2011 and a Familial Adenomatous Polyposis (FAP) diagnosis two months later. Reluctantly, she traded in her post-college job for surgical gowns to have her cancerous colon removed. While working abroad in 2013, she noticed another trick up FAP’s sleeve and was diagnosed with a desmoid tumor. If anything, she says this tumor confirmed that while she hoped to be one in a million, statistically speaking, she’s closer to four in a million. Patient advocacy fills the void left by her colon and her former job title. As the Associate Director of Global Patient Advocacy at BioCryst Pharmaceuticals, she ensures that the voices of rare patients and the nonprofits that serve them are heard and supported. She’s the co-founder of Young Adult Cancer Connection which hosted Cancervention, Philadelphia’s first young adult cancer conference, and the creator of FAPulousTV, the first YouTube Channel dedicated to discussing FAP. Her rarity status came in handy while leading the Community Engagement Team for three years at rareLife solutions. The other diagnoses she contends with include an active chocolate addiction and the travel bug.

“My desmoid diagnosis made me realize that I could not simply put my health challenges neatly in a box and move on. Instead, I was going to have to learn how to live with this disease and in order to do so, I needed to meet others who could relate. The young adult ‘cell mates’ I have connected with are just as responsible as the medical treatments I have undergone for me still being here today.”

Gabby was diagnosed with a desmoid tumor in her right calf muscle in August 2021. Like most patients, she had never heard of a desmoid tumor before her diagnosis. She was shocked to learn how rare they are and that she was unlucky enough to have one. Gabby is taking part in a clinical trial and hoping it will not only help her, but also help advance desmoid tumor research.

“I have been taking part in a clinical trial to help find a cure for desmoid tumours, and while the side effects can be challenging it is giving me hope that we are getting closer to finding a cure for this life changing disease.”