It is November 15, 2018 when two young women, both from Rome, in the presence of a public official, sign the association’s deed of incorporation of the DESMOID FOUNDATION – ASSOCIAZIONE ITALIANA TUMORE DESMOIDE. Their meeting, completely fortuitous, took place on February 27, 2018: an important date for both of them who decided to celebrate as the anniversary of a great friendship and the birth of an ambitious project.
In six months, Enrica and Giulia – working hard together- started an associative project: in September 2018 the soul of the Desmoid Foundation was already born. The project was formally presented to the medical team of the Cancer Institute of Milan: the beginning of an important collaboration between the Association of patients and Doctors. Professionals of great depth and extraordinary sensitivity will make up the Medical Board of the Desmoid Foundation. An extraordinary milestone and a solid guarantee for Desmoid Cancer patients.
Giulia is a young Roman woman of 28 years old. She has a Desmoid tumor in his left arm which cannot be operated
She tells us the reason why the Desmoid Foundation was born:
“When you are diagnosed with cancer at 26, the world collapses all over you. Initially you wonder why you, what have you done wrong.
You never smoked, you ate well and played sports from an early age. You have followed all the guidelines for a healthy lifestyle but all this was not enough.
You barely have the time to enjoy your best years lightly, to do the nonsense that that age could still justify you, that visits begin, the therapies, the fears and the anxieties appear.
Then you can either collapse or react.
VI must admit that the first option touched my mind, but then I met a person, by chance, and without noticing it she upset my life.
This time for the better.
Enrica, the woman who changed my mind, a concentrate of red hair and energy, has become first of all a friend and then a co-founder of this Association too
The association was born because we both shared all the frustrations that this tumor had brought us. It’s a rare tumor, so I had to wait 2 years before receiving the right diagnosis, bounced from one doctor to another. I had to travel 700 km from home to get an answer and I have to keep doing it every three months for visits. And then the therapies available that are not ad hoc. So I had to face an orphan disease, without a drug that can cure it with certainty.
The only thing you can do is to try the medical treatments that doctors propose. Try.
But at 26, you don’t want to spend your life trying new drugs and chemotherapy.
You want to let off steam and have fun.
And all these fears came out talking to someone who, finally, had your same problem, could understand you. She could understand the pain of that mass, the shocks, the electricity that passes through you and the weakness in your movements. She understood what it means to live with pain every day.
We created a community with the help of many other patients. And we have used social media perhaps with their most regal purpose: to Create Support for patients with Desmoid Cancer. Wherever they were. From now they are NO LONGER ALONE.
The time to give them the right support has come as well as the necessity to disseminate correct and updated information on the disease among the scientific community and in that of patients. The purpose is to create a network of specialized doctors throughout Italy. Our goal is to make sure that the therapies are no longer heterogeneous throughout the boot. That this disease should not be underestimated or “mistreated” with demolition surgery, leaving patients with the after-effects of the operations.
The time has come to unite and make oneself heard, as a single Voice.
Because together we are stronger.“
Enrica was a pediatric patient: She had the first tumor at 8 years old, on her left shoulder. The last one- which was the fourth- at 15 years old.
Due to the repeated operations, she suffered the partialdemolition of the left upper limb.
She tells us the reason why the Desmoid Foundation was born:
“Last year I was thinking about motherhood. Years before I read and heard that pregnancy could be one of the causes of the onset or reactivation of the disease. This idea remained in my head but I still believed it was fake news . I thought that because I couldn’t understand how a pregnancy could reactivate a tumor that I had more than 20 years ago?!
So being sure that the pregnancy couldn’t be a cause of the reactivation of the disease I asked to a group of patients on facebook.“Does pregnancy can reactivate my tumor?”
The answer was given by a young Roman girl. The girl who replied was Giulia, a medical student.
Her answer was a bomb that exploded in my hands .. she said “YES”.
She sent me immediately after a scientific study where the correlation between pregnancy and the Desmoid Tumor was highlighted.
I asked Giulia to meet her to thank her. We met for the first time in a small bar.
When she arrived -beautiful and sunny, with the hard eyes of those who strive not to be afraid of suffering- I was enchanted. 20 years have passed since my last surgery, but she made me relive everything through her words and her experience. She explained me how hard has been to find someone who knew this illness, how hard was to face diagnostic errors and to travel throughout Italy and abroad in order to find a doctor specialized in this tumor. The only difference was that she didn’t experienced the surgery that in my case has conditioned my life forever.
I don’t have many memories of those years, you know, maybe because the mind decides what to keep and what to let go. What I cannot erase, however, is the suffering that still lives in me today: no child should live what I have experienced. Every child should be protected from suffering, from the lack of certainties, from attempts and experiments that went wrong, from hospitals that become “home”, from the rumble of absurd noises under the CT scans which then become familiar. Every child should never see their parents, grandparents, sisters or siblings suffering for their own problems and to change their life for 7 long years.
Giulia’s anger and mine, her strength and mine, her tenacity and determination, the desire in common that no one lives our same story, I think they simply added up. The result of the Desmoid Foundation: an association that wants to be a community that protects, informs, directs, consoles, supports patients. So in few words an Association that will be there for you, always”.