Lucia Deganutti

LUCIA DEGANUTTI, 52

2016 BAKKEN INVITATION HONOREE
CIVIDALE DEL FRIULI (UD), ITALY

Medical Condition: Urological disorder
Medical Therapy: Therapy for bladder control
Charity: The Italian Association for Interstitial Cystitis (AICI)

Lucia, 52, has interstitial cystitis/bladder pain syndrome (IC/BPS) —a rare disease that affects muscles and nerves in the bladder and other pelvic organs, causing pain, and urinary frequency and urgency. After suffering for 10 years, Lucia finally received help in 2006, when a doctor with the Italian Association for Interstitial Cystitis (AICI) recommended the adequate therapy after which her symptoms improved dramatically. Today, Lucia serves on the AICI directory board. Lucia’s Bakken Invitation Award will help extend psychological assistance at the national level through a virtual platform for patients with IC/BPS.

LUCIA'S STORY

“I experienced the first symptoms of IC/BPS when I was in my early 30s. No doctor could explain why this was happening and my life began to crumble away. The situation went from bad to worse, my quality of life was non-existent, and my health was so compromised that I could not take care of my two small children, much less work or even eat properly.

“Finally, I found the Italian Association for Interstitial Cystitis (AICI), which led me to one of the few doctors who studied this rare disease and recommended the right therapy. At that moment, my life took a radical turn: the pain decreased, and my frequency and urgency to urinate improved dramatically. I began to live again! I was able to take care of my family, to work, and to have a social life.

“As a result, I decided to donate part of my ‘extra life’ to the AICI, which had supported me in my darkest hours. As a member of the AICI directory board, I work on key awareness-raising and information projects addressed to the scientific, clinical, and pharmaceutical worlds, as well as the political and institutional framework so that patients with IC/BPS can attain an early diagnosis and the best treatments available as soon as possible.

“I have also set up a pilot psychological support course at the Udine Hospital to help patients become more aware of their potential to manage their chronic diseases and overcome difficulties in their lives. This project will soon be available in other Italian cities. I feel sharing my experience with others is the best way to help them make living with a chronic disease easier and less traumatic.”

LUCIA'S WORDS OF INSPIRATION

"When you are given the chance to enjoy a rebirth, the greatest joy comes from sharing this feeling with others in similar circumstances and providing them with the tools necessary to achieve their goals."

$20,000 GRANT MAKES AN IMPACT

The Italian Association for Interstitial Cystitis (AICI) works to raise awareness of interstitial cystitis/bladder pain syndrome (IC/BPS) within the scientific, clinical, pharmaceutical, and political communities so that patients with the condition can receive an early diagnosis and the best treatments available as soon as possible. This grant will help extend psychological assistance at the national level through a virtual platform for patients with IC/BPS.

*Not everyone who receives this therapy will receive the same results as the patient in this story. Talk with your doctor to determine if this type of therapy is right for you.