On April 8th, people from around the world unite in support of Cushing’s Disease Awareness Day.
In this animated video, learn more about Cushing’s disease, including the mechanism of disease, clinical manifestations, symptoms and diagnosis challenges.
Filed under: adrenal, Cushing, Cushing's, Diagnostic Testing, pituitary, Treatments | Tagged: Cushing's Awareness Day, diagnosis, symptoms, video | Leave a comment »
It’s unbelievable but the idea for Cushing’s Help and Support arrived 15 years ago last night.
I was talking with my dear friend Alice, who ran a wonderful menopause site called Power Surge, wondering why there weren’t many support groups online (OR off!) for Cushing’s and I wondered if I could start one myself and we decided that I could.
The first website (http://www.cushings-help.com) first went “live” July 21, 2000 and the message boards September 30, 2000. Hopefully, with these sites, I’m going to make some helpful differences in someone else’s life!
The message boards are very active and we have weekly online text chats, weekly live interviews, local meetings, email newsletters, a clothing exchange, a Cushing’s Awareness Day Forum, podcasts, phone support and much more.
Whenever one of the members of the boards gets into NIH, I try to go to visit them there. Other board members participate in the “Cushie Helper” program where they support others with one-on-one support, doctor/hospital visits, transportation issues and more.
Filed under: Cushing, Cushing's, Inspiration, Interview, podcast, Thankfulness | Tagged: Alice Stamm (Dearest), anniversary, birthday, Cushing's Help, cushings-help.com, message boards, Power Surge | 1 Comment »
It’s Here!
Dr. Cushing was born in Cleveland Ohio. The fourth generation in his family to become a physician, he showed great promise at Harvard Medical School and in his residency at Johns Hopkins Hospital (1896 to 1900), where he learned cerebral surgery under William S. Halsted
After studying a year in Europe, he introduced the blood pressure sphygmomanometer to the U.S.A. He began a surgical practice in Baltimore while teaching at Johns Hopkins Hospital (1901 to 1911), and gained a national reputation for operations such as the removal of brain tumors. From 1912 until 1932 he was a professor of surgery at Harvard Medical School and surgeon in chief at Peter Bent Brigham Hospital in Boston, with time off during World War I to perform surgery for the U.S. forces in France; out of this experience came his major paper on wartime brain injuries (1918). In addition to his pioneering work in performing and teaching brain surgery, he was the reigning expert on the pituitary gland since his 1912 publication on the subject; later he discovered the condition of the pituitary now known as “Cushing’s disease“.
Today, April 8th, is Cushing’s Awareness Day. Please wear your Cushing’s ribbons, t-shirts, awareness bracelets or Cushing’s colors (blue and yellow) and hand out Robin’s wonderful Awareness Cards to get a discussion going with anyone who will listen.
And don’t just raise awareness on April 8. Any day is a good day to raise awareness.
Filed under: Cushing, Cushing's | Tagged: awareness, Cushing's, Cushing's Awareness Challenge 2015, Cushing's Awareness Day, Dr. Harvey Cushing | 1 Comment »
Novartis is re-sharing these Cushing’s disease resources for Rare Disease Day:
Filed under: adrenal, Cushing, Cushing's, pituitary, Rare Diseases, Video | Tagged: Cushing's Disease, Dr. Harvey Cushing, infographic, Rare Disease Day, video | 2 Comments »
Theme: Living with a Rare Disease – Slogan: Day-by-day, hand-in-hand
2015 marks eight consecutive, successful years of Rare Disease Day. Continuing the momentum, Rare Disease Day 2015 puts the focus on the daily lives of patients, families and caregivers who are Living with a Rare Disease.
Over 6000 different rare diseases have been identified to date, directly affecting the daily life of more than 30 million people in Europe alone. The complex nature of rare diseases, coupled with limited access to treatment and services, means that family members are often the primary source of solidarity, support and care for their loved ones. The Rare Disease Day 2015 theme Living with a Rare Disease pays tribute to the millions and millions of parents, siblings, grandparents, spouses, aunts, uncles, cousins, and friends whose daily lives are impacted and who are living day-by-day, hand-in-hand with rare disease patients.
Typically chronic and debilitating, rare diseases have enormous repercussions for the whole family. Living with a rare disease becomes a daily learning experience for patients and families. Though they have different names and different symptoms, rare diseases impact the daily lives of patients and families in similar ways.
How to find a diagnosis?
How to access treatments?
How to find appropriate expertise?
How to work with a team of caregivers, such as doctors or physical therapists, and other healthcare professionals and coordinate care between them?
How to operate special equipment?
How to administer treatments?
How to identify and access social services?
How to manage the economic burden of living with a rare disease?
How to ensure the well-being of the entire family and balance priorities?
Patient organisations become a crucial source of information, experience and resources. Day-by-day, hand-in-hand, together we present a united voice to advocate for the treatments, care, resources and services we all need. Patients, families and organisations are pivotal to the momentum of creating solutions for the daily challenges of living with a rare disease in solidarity with all stakeholders – caregivers, healthcare professionals, specialised social services, researchers, pharmaceutical companies, policy makers, and regulatory bodies.
Internationally, it is essential to send a strong message of solidarity to the countless rare disease patients and families throughout the entire world. Together, we can transform the individual experience of patients and relatives around the world into collective actions, support, advocacy and community building.
via Rare Disease Day ® 2015 – Theme of the Year: Care.
Filed under: adrenal, Clinical trials, Cushing, Cushing's, Inspiration, Meetings and Conferences, pituitary, Rare Diseases | Leave a comment »
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