The Merriam-Webster dictionary has a three-pronged definition for the word advocate: one who pleads the cause of another; one who defends or maintains a cause; and one who supports or promotes the interests of a cause or group.  From that definition alone, you can probably think of many things for which you are an advocate in your own life.  We are moved by our experiences and those of others we care about, so it’s inevitable that the Cushing’s journey leads to advocacy for some of us.

The following firsthand accounts come from Marie Conley and Amy Dahm, two women who have experienced Cushing’s, Adrenal Insufficiency (AI), and many other cortisol-related complications in their lives.  They have both used their existing skills, interests, and resources to effectively advocate for our community.  By sharing their stories, we hope to encourage you to know that you are capable of advocacy using abilities and interests that you already possess.

Marie

I wonder if people like Theodore Roosevelt, Maya Angelou, and E.E. Cummings ever thought that their words would have such an impact on a person that they would redirect their life efforts to help a community in need of advocate voices. 

I was diagnosed in 2012 with Cushing’s Disease after years of tests, specialists, diets, frustrations, and no resolution as to what was happening to my body and my mind.   While I believe I am a “glass half full” kind of person, I found myself wanting to not only knock the glass over but crush it in a million pieces!  Theodore Roosevelt’s words from The Man in the Arena helped me get through these tough times.   To paraphrase, when you believe in a worthy cause, put yourself out there and try to do something about it.  I also made a deal with God: “You get me through this and I will take my tenacity and all of the professional skills I have and do something to help others like me.”   That is what I have done.

There are many things Cushing’s patients can commiserate about, but two things affected me the most: the lack of information available for my husband, parents, family and friends, and the fact that when I was ready to talk, it was hard to find anyone near me that was like me.  I was also disturbed to become aware of how little the medical community knew about our disease.  I wanted to help change that.

In 2014, I created The Conley Cushing’s Disease Fund (a project of The Foundation for Enhancing Communities, fiscal sponsor). The funds raised are used to create awareness and advocacy for patients and their loved ones who are suffering from this disease, as well as to support institutions and organizations focused on research and treatment surrounding Cushing’s.  

With the encouragement of my doctor and parents, I then self-published emails I wrote to family and friends in a book called A Cushing’s Collection.  It begins three weeks before my diagnosis and runs through a difficult and complex journey like so many others experience: a failed brain surgery, removal of my adrenal glands, removal of the lower right lobe of my lung, and trips upon trips to the ER.  It also deals with the reality of telling our five-year-old son that “Mommy has a boo-boo in her head and the doctors will help me feel better.”  It shares the realization that I needed to learn that I am not who I was, and I needed to learn a “new normal.” It describes my envy and frustration that dogs and horses get more ‘publicity’ about this disease than humans.  Please note, I am the furthest thing from a writer and have no experience at all in this world, but I researched and called around and was able to turn this into reality. I am honored when I hear from people who have read it.  I’m humbled when family members share that they have a glimpse into the world that their son/daughter/wife/husband/niece is going through. All net proceeds from the sale of my book go directly back to the Fund.

When I was finally ready, I wanted to meet others like me.  With the help of CSRF, word of mouth, and local hospitals, we now have an amazing group of patients within our support group.  Our group is informal and meets about four times a year but communicates with one another often. We meet outside of Philadelphia but have patients participating from the four surrounding states.  

In November 2014, I planned and executed the Fund’s first annual fundraising and awareness reception in Hershey, Pennsylvania.  Cushing’s patients and their families are the special guests, and the festivities and celebrations revolve around them. We also have a patient and family breakfast the following morning. I used past relationships to leverage support and awareness in any way possible. I wasn’t sure what would happen that first year, but I knew that any money I raised was more than I had the day before to support the mission of the Fund.  I cashed in every professional and personal chip I had to make the event a success.  I would be the first to say that coordinating a large fundraising party is not the easiest tactic one should use to help raise funds, but I was a professional event planner and fundraiser, so this was a natural fit for me.  The dollars raised at the event not only support the patients and families, but also help increase awareness for medical professionals for early diagnosis through lunch and learns with medical students, CME classes for medical staff, and grand round presentations.  

I have taken all the professional skills that I have acquired in the past 20 years, my tenacity, a great contact database, and a lot of luck (and hydrocortisone) and have been blessed with the ability to do this.  I know I am unique.  I know I am very lucky because I work from home.  I know I am fortunate to have extremely supportive parents who help me stuff envelopes and drive with me to places.  These attributes have allowed me to help in this way.  Given my health, I have learned the hard way how to manage my time between my family, our home, my job, and my advocacy.  I have pushed it and ended up on the couch (or in the ER) when I didn’t manage my energy output. There are days that I just can’t get the job done and need to wait for tomorrow!  There are days I can’t get out of bed. I just try my best and I hope that my efforts in some small way help some patient or some undiagnosed person not have to go through what I have gone through, or some family member to have a better understanding of what their loved one is going through.  I hope that through awareness, a medical professional will take another moment, recall what they heard in “that Cushing’s class,” and re-evaluate the patient in front of them.  

I don’t want to break the glass of water anymore, and I refuse to see it as half empty.  I do accept that on some days the glass of water is murky and unappealing, but it’s never empty. This disease has won a few small battles over the years, but it won’t win the war!

I recognize I am in a unique position to do what I do, but when it comes to advocacy there is nothing too small.  If I can help you assess how to leverage your strengths so that you can do something, please contact me at [email protected].  Like John F. Kennedy said, “One person can make a difference, and everyone should try.”

Editor’s Note: Marie has been working with the National Organization for Rare Disorders (NORD) to coordinate the Pennsylvania Rare Disease Press Conference in Harrisburg, PA for the past three years.  She also helped create and was then appointed by the Governor to serve on the PA Rare Disease Advisory Council.  You can find out more about Marie, the Fund, her book, and events at kickcushings.com. 

A Cushing’s Collection: A Humorous Journey Surviving Cushing’s Disease, Diabetes Insipidus, and a Bilateral Adrenalectomy, referenced in this article, was self-published by Marie.  Over the years we’ve met several patients who have been so deeply affected that they similarly self-published records of their Cushing’s experiences.  If you have ever wanted to write something, there are many free self-publishing resources online as well as publishing companies that offer tools to make your work more polished and professional.

Amy

If someone had told me after my surgery in 2014 that I would appear on CBS radio with a celebrity fitness trainer, be filmed for a documentary about bias and women’s health, lobby Capitol Hill to increase funding for the National Institutes of Health (NIH), help develop an Adrenal Insufficiency (AI) protocol for service dogs, or do a podcast on “my Cushing’s journey”—I would have laughed.  At the time I couldn’t even put my pants on or open a pickle jar.

My journey into advocacy has been fairly organic and full of unexpected friendships, turns, and experiences.  What has been driving it throughout is a desire to learn as much as I can about Cushing’s, a commitment to secure the best possible care for our community, and a desire to “show up” and be a face and voice for our concerns.  In many ways, it’s also been a subconscious exercise for validation and to try to find meaning in an isolating, physically grueling, demeaning, and painful experience.  If there is anything I can do to minimize others’ suffering…I want to do it.

Becoming a Patient

When I went to NIH for my testing, treatment, and surgery, I was cast adrift into a completely unfamiliar environment full of terms I did not understand, beeping machines, and invasive tests.  I felt helpless. But it was such a relief when I met other people like me and doctors who had seen and treated other people like me.  When I asked about patient support groups, one of the nurses mentioned that there was an organization that published newsletters and one of the “alumni” patients suggested I check out CSRF.

After I came home, I quickly realized that I had to learn as much as possible about how to manage my illness – my life literally depended on it.  It was going to be a month before my regular endocrinologist could see me and I was in the throes of withdrawal with skull-splitting headaches; I was having difficulty distinguishing low cortisol (hellish) vs. adrenal crisis (life threatening).  Cushing’s, like any rare illness, demands that the patient educate herself and steer her own ship.  I would not be able to rely solely on my doctors; I had to rely on what my own body was telling me.  I had no tools to measure my variable cortisol levels except my own body’s symptomology – and high cortisol and low cortisol often had similar symptoms.  My Cushing’s “fairy godmother” Tasia sent over an AI patient guide and told me to check out some of the online patient groups, or boards. I signed up for the ones that had the most people and started to realize that they each had their own personality and purveyed different information.  The press officer in me signed up for all of them because I wanted the most balanced information landscape possible.   I wanted to help answer other people’s questions, but realized that until I became super-educated about the illness – I would not be able to be an effective member of the on-line community.

Advocating Within the Cushing’s Community

Through one of the CSRF newsletters I learned about the CSRF National Patient Education Day in Atlanta, Georgia.  I could not believe my luck!  Less than a month after my surgery there was going to be a national conference focused on all things Cushing’s and full of Cushing’s patients.  I really wanted to go, but was afraid to travel so soon after surgery.  When I discussed it with my boyfriend, he volunteered to go with me.

The CSRF Conference was a revelation! Some of the medical field’s brightest minds were presenting, and I got to speak with so many other Cushing’s patients that were in various stages of recovery.  For the first time I saw there was a light at the end of the tunnel; it gave me hope.  I met a mother-daughter pair of Cushing’s patients, and truly saw there is life after Cushing’s and what that looked like.   I was shocked and horrified, though, when one woman told me although it was tough, she had worked throughout and had not taken any time off of work.  I was flabbergasted – she had worked through BRAIN SURGERY?!  And then someone told me that many doctors do not consider pituitary surgery like actual brain surgery. I was like, “How is this even possible?”  I also noticed that although all of the male patients had partners in attendance with them…only two female patients (out of an entire roomful of people) did.  This underscored the need for more support for patients.

Advocating with Family and Friends

One of the hardest aspects of Cushing’s is learning how to advocate within your own community amongst family, colleagues, and friends.  This is difficult because they have no frame of reference, have never heard of the disease, and there is a large social bias against middle-aged female patients and diseases that make them fat, ugly, and emotionally unstable.   Although my doctors warned me about the psychological symptoms, my friends and family were not prepared for the psychological, physical, and personality changes that Cushing’s rendered (and quite frankly, neither was I).  Even my newly curly hair (much less all of the other stuff) threw my Mom and sisters for a loop.

At work, I had to weigh how much to tell people with the stone cold reality that I would be gone for two months—and possibly more.  My team was going to have to cover my work or bring in someone to cover it for me.  No one had heard of Cushing’s; they literally had no frame of reference.  At that point, I was still trying to manage my “corridor reputation” and was leery of informing people that I would have cognitive deficits because of the adrenal insufficiency.  Plus there was the whole issue of informing people how to administer an emergency shot in case I went into adrenal crisis.  It was an exercise of balancing privacy and discretion with my new medically fragile reality.  Plus I was worried that any information could be exploited and used against me, and any requests for accommodation would be viewed as weakness.

NORD Rare Disease Summit

The NORD Rare Disease Summit was my first glimpse of what is possible with rare disease advocacy and how it felt to be part of the rare disease community.  Since I lived in DC, I signed up as an individual patient and met up with Leslie Edwin as a representative of CSRF.  NORD gave me a scholarship that covered the cost of my registration fee.  I met other AI disease advocates and observed the importance of showing up, speaking up, and being politically organized; diseases even rarer than Cushing’s were receiving more funding, resources, and advances, in my opinion because they were politically astute.   At the resource fair, I marveled at the different types of resources available, including the NIH Rare Disease Hotline and free patient transportation.  We could book one-on-one meetings with pharma companies and attend sessions that taught us the latest medical trends, breakthroughs, and how to interact with the FDA. One of my business school colleagues was a panelist, and seeing him made me think, “I can do this.”

CSRF DC Patient Support Group

As I was starting to recover, two long-term members of the CSRF, Stacy and Renee, began a DC/ MD/ VA Cushing’s patient support group.  Our first meeting was at a local Starbucks and it was such a relief to meet other Cushies in the flesh to talk about our illnesses, our stories, approaches, and treatments.  Over time, one of our local Cushies, Georgina, offered to host the meetings in her home.  These gatherings enabled us to compare notes and mentor new patients and each other.

Johns Hopkins Pituitary Day

Several of the patients in my support group told me about Hopkins Pituitary Day and it piqued my curiosity.  I felt uneasy because 1) I am an adrenal patient and 2) I’m not a Hopkins patient.  I called them up and they graciously agreed to let me attend the conference.  It was cool meeting patients from all over the mid-Atlantic region, and I watched in awe as Mike Scalise, an Acromegaly patient, got up and read from his book, The Big Catastrophe.  He articulated so many experiences that resonated with me (like going into adrenal crisis during an important family occasion). The first half of the conference included presentations from world-class endocrinologists, pituitary experts and patients. The second half was a chance to sit down at different tables and ask questions of these experts in a relaxed setting.  Later, when Mike came through DC on his book tour, I organized a Cushing’s patient dinner with him.

Making Sam into an AI Service Dog

After my dog, Sam, naturally alerted on me one night, I researched local trainers in the area and he and I went and trained with a renowned diabetic alert dog trainer. The trainer and I had a “Eureka!” moment where we worked out that each dog would have to be trained to the owner – and could not be universally trained   – unlike diabetic alert dogs, because it seemed each AI patient has a different “cliff.” 

At the CSRF 2017 National Patient Education Day, I held a side session where I presented about service dogs in general and my experiences with Sam in particular.  Over time, as we became more attuned to each other, I would bring Sam with me to the Visitor’s Center of the National Capitol for Rare Disease Week, panels, discussions, movies, and lobbying on Capitol Hill.  He helped to make Cushing’s and AI, an invisible disability, more visible.

NIH Rare Disease Day

While coming back for checkups at NIH I noticed information about the NIH Rare Disease Day at the end of Rare Disease Week in February. There was a full day of presentations about the newest technologies, like CRISPR, as well as patient panels, best practices, and a “disease fair” of information and resources.  While touring the disease fair I met the leader of the rare tumor clinic in person.

Lobbying and Rare Disease Week

Shortly after I started training him, Sam and I attended a session in the Visitors’ Center of the Capitol to kick off Rare Disease Week, as I assumed that others would have their service dogs with them as well.  After everyone clapped during one of the presentations, Sam started barking in unison.  I learned that there is a whole group of Congressional representatives dedicated to rare diseases, the Rare Disease Caucus.  One of the members of the Congressional Rare Disease Caucus got up and addressed his audience, “I am proud to be here to represent my constituents, both human and canine…” while Sam beamed and the audience laughed.   At the event we heard about a chance to go and lobby our Congressman.  I really wanted to go…but it was necessary to register in advance.

The next year I kept my eyes open for information about the lobbying event and registered for all Rare Disease Week activities.  There was a full roster of events, including a film screening, art show, information sessions, a lobbying training workshop, and the actual lobbying day itself.  It was all free.  Sam and I enjoyed the pre-screening happy hour and connecting with other rare disease advocates. 

In the lobbying workshop, we took a class that taught us how to present our “elevator speech” and then in the afternoon met with our state delegations.  As a DC resident, the organizers assigned me to the VA delegation, which was huge at 30 members.  The group chose Sam and me to be one of four speakers to the offices of VA Senators Tim Kaine and Mark Warner, and we were each given a schedule.  Each speaker had about 3-4 minutes to tell their stories and in my case, appeal for additional funding for the National Institutes of Health, where I had been a patient for years.

The day of the lobbying we met up in the Rotunda beforehand and took photos before heading to the Senator’s office.  One of the most seasoned rare disease advocates introduced us, and the Senator’s staff welcomed us.  The first speaker was a man and father of four who had lost all four of his children to lymphedema.  I spoke about NIH funding, and another woman discussed her husband’s fight and decline, and how it had impacted their family.

One of the other members of the delegation was a rare disease advocate who had a film crew following her.  One of the crew members stopped to say hi to Sam, and I found out they were filming the documentary “Miss Diagnosed”—a documentary about bias against women in medicine.  They interviewed me on the spot and I shared with them how difficult it was for Cushing’s patients, who are primarily female middle-aged women, to get diagnosed, in part because of bias.

After the lobbying I had lunch with my friend Alison, a fellow Cushie from Boston. We met a glamorous Maryland beauty queen, who also happened to have AI and is a huge advocate within the community.  A woman named Diane Silverman and I also hit it off – she was a Development Consultant for the newly-merged PheoPara Alliance and we vowed to keep in touch.

CBS Radio Show

In Fall of 2017 Shianne Lombard-Treman reached out to me and asked if I would be interested in going with her on the radio to promote Cushing’s awareness and her new book about Cushing’s. I said, “Sure, I’d be happy to!” We drafted potential questions and answers for the interview and had a pre-interview call with Baltimore radio personality Gina Crash.  The next morning at the studio we discovered that all three of us were Sicilian.  Shianne’s husband, Tom, stopped in, and we had a blast – the interview felt like three girlfriends chatting and flew by.

I was devastated several months later when Shianne committed suicide as a complication of Cushing’s and Bipolar Disorder. She looked so good on the outside that it was difficult to gauge what a difficult time she was having.

The Empowered Patient Podcast

In Spring of 2018 while meeting up with one of my business school classmates and his family, I confided that I had been a Cushing’s patient.  He himself had also been diagnosed with a chronic illness, and demonstrated kindness and empathy when I told him.  He encouraged me to do a segment of the “Empowered Patient” podcast (empoweredpatientradio.com), and introduced me to the producer.  The producer and I hit it off.  We did the interview over the phone, and she asked me a series of thoughtful questions that highlighted the challenges of being a rare disease patient.

PheoPara Alliance Gala

In Summer of 2018, my friend Diane reached out and invited me (and Sam!) to the PheoPara Alliance Gala. It was inspiring to see and experience such a wonderful event.  The fundraiser had a cocktail hour, dinner, and then post-dinner auction at a nearby hotel, and I learned that the entire organization was funded by a private family with no ties to the illness – the family saw an opportunity to make an impact in the rare disease space and took it.

How You Can Get Involved

There are so many ways to get involved: going to conferences, lobbying your state senators, serving on patient boards.  Basically, I just kept saying “yes” even if I had never done it or wasn’t sure what to do.  If any of these sound appealing, please let me know and I am happy to send you in the right direction.

My goal is to have a whole phalanx of Cushing’s warriors at the next Rare Disease Week, lobbying on Capitol Hill, or at the next rare disease conference.  I want media blanketed with stories about Cushing’s survivors, patients being asked to present our stories at medical conferences, and patients to serve as patient liaisons with the FDA. Part of this entails becoming more involved with the rare disease community as a whole.

Some potential next steps I see for our community are:

• Creating a Cushing’s registry for research purposes
• Becoming involved with the FDA Patient Process
• Creating a patient-centered Cushing’s/AI patient “workbook”—this is Shianne’s idea
• Creating a diagnosis and rehabilitation center for Cushies

Please feel free to reach out to me at [email protected] or 202-550-5088 if you have questions or ideas to discuss.

by Marie Conley and Amy Dahm

 

Fall, 2018