As most of you are probably aware, for many years I answered email on a daily basis and handled all aspects of the CSRF newsletter. As the CSRF has grown over the years, email volume continued to rise and the newsletter became a 24 page document; it was clear that the CSRF needed more help to sustain and grow these efforts. In the Fall of 2015, the CSRF asked for volunteers to rotate answering CSRF email and to assist with the CSRF newsletter. I am personally so very, very thankful to the following members who volunteered and are actively helping the CSRF. We are hopeful that by forming some additional committees, we can get more of our members involved. Please take a look at the current volunteer opportunities.
These dedicated individuals answer emails that come to [email protected] and respond to every new member. Currently, we are adding about 5 new members per week as well as responding to many emails from non-members.
About Cushing’s: At the end of 2010 I thought I was going crazy. I had just turned 40 and it was like a switch flipped and everything started changing. I went from a healthy active person to always being in pain and not wanting to go out or do anything. I had high blood pressure, acid-reflux, diabetes, and I was losing my sight. My appearance changed as well as my personality, and not in a good way. I was persistent and within 6 months of my worst symptoms, I was diagnosed with Cushing’s. I had transsphenoidal surgery to remove a pituitary tumor in August 2011. I am currently in remission.
Why I volunteer: Without the support and information provided by the CSRF, I would have thought I was crazy. It is great to have a network where you know you are not alone in what you are going through-whether still trying to get a diagnosis or post procedure. I wanted to volunteer to give back and possibly help someone as I was helped.
About Cushing’s: I was diagnosed with Cushing’s disease back in 2007. After being sick for the previous 15 years, there was going to be a dramatic change in my life. I had two unsuccessful transsphenoidal surgeries. With no other options at the time, I followed the advice of my endocrinologist and participated in experimental medical research. That research was phase two in the FDA’s approval for the medicine now known as Signifor. In my case, that option didn’t work either. I had Proton Radiosurgery in the late fall of 2008. Looking back, this has made me stronger through unexpected endurance to the unknown variables.
Why I volunteer: I am volunteering with CSRF to educate the public, doctors, and scientists to the scope of what a Cushing’s patient has to deal with on a daily basis. Additionally when I started my diagnosis with Cushing’s Disease I knew nothing about the disease. I needed to educate myself on my medical condition. Through my volunteer experiences as a support group leader and part of the email team, I know there are patients out there that feel alone. I want to let it be known that they are not alone in this journey. One of us has similarly experienced what you are going through. Hopefully, my insights bring some comfort, and answers to questions.
About Cushing’s: I was diagnosed with Cushing’s Disease in 2009 after almost 7 years of seeing many specialists. I had two pituitary surgeries which were unsuccessful, so I had a bilateral adrenalectomy in 2010.
Why I volunteer: The CSRF has always been a great resource for me. There are many people who helped me when I had Cushing’s, I want pay it forward by making the journey through Cushing’s a little bit easier for someone else.
As you can imagine getting the CSRF newsletter content together, edited and to print involves a tremendous effort. I am very thankful to have assistance from Meggan, who edits patient stories, Janis who edits some articles and Heather, who does the newsletter layout.
About Cushing’s: I had successful surgery for a 7 mm ACTH-producing pituitary tumor in February 2008, 9 days before my 30th birthday. I fully weaned off hydrocortisone 4-6 months post-op, and went on to have 2 lovely children.
Why I volunteer: I volunteer because I’m genuinely touched by each person’s story. We have many different journeys to diagnosis, and unique paths post-op. I’m grateful that my path led to restored health through Dr. Mary Lee Vance and Dr. Ed Oldfield at the University of Virginia. And I’m humbled and awestruck by those who fight a battle with Cushing’s every day.
About Cushing’s: In her early 20s, my daughter’s personality and appearance changed drastically. She was originally misdiagnosed; in June 2015 she self-diagnosed herself with Cushing’s. She was then referred to Dr. Findling at the Medical College of Wisconsin where she underwent IPSS which determined she had a micro-adenoma in her pituitary. In September 2015 she had successful transsphenoidal surgery at Massachusetts General Hospital (MGH).
Why I volunteer: I am grateful for excellent medical professionals such as Dr. James Findling and Dr. Brooke Swearingen (MGH) who have dedicated their medical careers to treating Cushing’s patients. Their knowledge and skill has given us our daughter back!
About Cushing’s: I was diagnosed with Cushing’s disease in August 2011 after two years of seeing several specialists. I originally self-diagnosed through an internet search, but had to beg an endocrinologist to test me. In Nov. 2011 I had a 4mm pituitary adenoma removed and was cured. However, my full recovery (not needing corticosteroids) took 3 years.
Why I volunteer: I want everyone to know that Cushing’s exists, and help others so they don’t feel alone in their journey. I also feel empowered by the information and resources available to patients through the CSRF.
By Karen Campbell, Director and Newsletter Editor, Spring, 2017