We are two French ladies, one living in the US since 2003 (Catherine) and the other one living in France (Sandra). We met through a group of ACC Facebook’s patients group and connected immediately.
What are the odds of finding someone in such a different way of life – a different age, a different country – who you can bond with so easily? Through ACC, we have built a real and strong friendship, despite being an ocean apart, and share a common goal: helping other patients worldwide!
Catherine was born in 1968 and currently lives on Long Island, NY, USA. A mother of 3 adult boys, she worked many years in marketing for LVMH before working on bi-cultural education (BAYARD Presse – translations – virtual French class).
She almost diagnosed herself with Cushing Syndrome (right adrenal mass of 7 cm) in July 2018 (Happy 50th birthday). – but 10 days after surgery, this was sadly redefined as ACC… Three months later her left adrenal was removed too, by her own choice (and on the advice of her medical team), after it showed some suspicious symptoms (probably precancerous). So no more adrenal glands! But she is living happily with a few simple changes in her life (lots of medications including Lysodren and many medical follow-ups!).
Sandra is thirty something (but she will always say she is 28!) living in Paris (France).
Working as Project Director in the digital world, she is geeky, loves video games, heroic fantasy, SF and Japanese music (please listen to Miyavi!). She is also into everything that is called lifestyle and always on top of trends (except for the fashion one – no sense of fashion in those NED cells). Diagnosed with ACC in 2018, she had dealt with undiagnosed Cushing Syndrome for about 2 years. By the time it was diagnosed, a 10 cm tumor was found on her right adrenal gland with an invasion in the vena cava. Surgery and Mitotane was next. It was a complicated one and since then she has also had neuropathic pain to deal with – but life must go on, right!
We had the opportunity to attend the ACC symposium 2019 together with ACC experts around the world . We unanimously got their support for the creation of an International Patient Association, to build a community that would be a great help for medical experts in offering patients better care.
We think that it is time NOW that ACC patients around the world to get together and be more unified to help medical experts, raise awareness and get answers. So we can speak as one.
Nothing can be done without you!
Be a part of the change and join us!