I’m grateful Amy Schumer shared her Cushing’s syndrome diagnosis
High-profile cases increase awareness — but we must get the facts right
News outlets have been abuzz over actress and comedian Amy Schumer’s recent announcement that she has Cushing’s syndrome, a disorder characterized by excess cortisol production. I was surprised to see the headlines and so many people commenting on the illness.
As someone with Cushing’s disease — a specific type of Cushing’s syndrome caused by a pituitary tumor — I’m excited to see the condition in mainstream news. In fact, many people I haven’t spoken to in a long time have reached out to share news articles and tell me they’re thinking of me. Before I was diagnosed with Cushing’s, I hadn’t heard of it, so I’m hopeful that a high-profile case will help spread awareness.
It’s wonderful how open Schumer has been about her syndrome. She’s talked about her symptoms, including having a rounder face. In the Cushing’s community, we refer to this as “moon face.”
Unfortunately, high-profile cases can also result in misinformation.
The bad
Schumer has exogenous Cushing’s syndrome, brought on by steroid injections (taken for reasons unstated, for now) that act like cortisol in the body. This type of Cushing’s can be reversed by tapering off the causative steroids. If symptoms persist or the patient isn’t able to discontinue steroids, doctors may treat symptoms individually.
These circumstances, however, may lead some people to think that all types of Cushing’s are easily reversible. For those of us whose disease is caused by a pituitary tumor, it’s much more complicated. For example, I had a tumor removed through surgery in 2020, but I’m now experiencing a recurrence. I’m taking several medications, but there’s no definitive cure for me. My disease is chronic and ongoing.
One reason Schumer decided to see a doctor was because a lot of people were commenting on her body and face. While it’s great that Schumer was able to get a diagnosis as a result, I fear that will make people think it’s acceptable to comment on others’ bodies. I don’t believe it’s ever OK to talk about how someone looks or tell them they might have an illness.
I can’t discuss high-profile cases without talking about inequities in the healthcare system. Getting a diagnosis as quickly as Schumer did is a luxury and a rare occurrence. It took me more than two years to receive my diagnosis, and I know that many of my fellow “Cushies” have faced a similar timeline.
In an interview with “News Not Noise” blogger Jessica Yellin, Schumer said, “I am extremely privileged to have the resources I have for my health and I know it’s not that way for most people. I am grateful and want to use my voice to continue to fight for women.”
The hopeful
I’m hopeful that Schumer’s case will help others realize how scary it is to develop a sudden illness, particularly Cushing’s. As Schumer told Yellin, “I was also in MRI machines four hours at a time, having my veins shut down from the amount of blood drawn and thinking I may not be around to see my son grow up.”
Schumer’s discussion of her fears and her humanizing of this illness could be a huge development for our community. I’ve felt exactly as she did. I’ve had to switch veins because blood stopped flowing, and I’ve thrown up in MRI machines because of issues with the contrast.
One of the biggest complaints I receive from people commenting on my column or reaching out to me via social media is that the public doesn’t know enough about Cushing’s. I hope Schumer’s case will fix that, at least a little bit.
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Note: Cushing’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cushing’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Cushing’s.
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Comments
Pauline
There has been interest here in the UK too. Fortunately our main news media noted that there were other causes of Cushing's & contacted the Pituitary Foundation for accurate information on it.
I was asked, as a Cushing's patient in remission to take part in an interview on BBC radio 4.
I was then approached by a reporter for another article on it in INews.
It was good to portray an accurate picture of the condition & it's lasting effects.
Audrey Fredericks
My husband and I have adequate health coverage. Unfortunately, even with adequate health coverage finding Cushings disease can be daunting because it is rare and most doctors have no knowledge of it. We went to an endocrinologist for eight years and asked why my husband’s skin was so bruised and thin as well as his legs so weak and his stomach area so heavy. The reply was, I don’t know! Not even a suggestion, that we see a dermatologist, or a muscular specialist, which we did, because it seemed like common sense. It was only when we changed doctors for a second opinion that the diagnosis was given! Had we stayed with the same doctor, my husband may have died from the disease and no one would have ever known. So I guess when I’m saying is, don’t be afraid to have a second opinion if you are feeling that there is something wrong with you.
Kimberly
Sadly, it is just adding to the stigma of “it’s not that serious” which couldn’t be further from the truth for so many who struggle with many other forms of Cushing’s. We have heard so many times over the years, “well at least it isn’t cancer.” Those with Cushing’s disease that have invasive inoperable adenomas, those with a few cells that are so small they can’t be detected but wreak havoc just as much, those with Cushing’s from their adrenal glands, those with the cancerous forms, and those who fight for way too many years too long just to get a diagnosis from someone after going through dozens of doctors deserve the right kind of light to be shed on this condition and not just some “famous” person to make it out to be not a real big issue or ridiculous exaggerations of how long they are in an MRI which honestly gives the impression and solidifies the thoughts of all of the nay sayers that “it isn’t really all that serious” or “well at least it’s not cancer.” From a mom of a son with Cushing’s Disease.
Jenifer Williams
Yess, Kimberly!! Exactly my thoughts! My prayers going out to your son from a fellow Cushie.
Jenifer Williams
I can't say I share the same sentiments about this. Yes, it's wonderful that Schumer has brought the illness name to light, but I believe it has caused more confusion, especially among those who are unfamiliar with the disease. I have had people who know I have Cushing's and know what all I have been through since 2010 approach me with 'advice' - "Amy Schumer has Cushing's and all she has to do to get better is stop taking steroids. Maybe you should talk to your doctor about that." Thr news and Amybhave covered exogenous Cushing's and gotten the word out that there is a 'cure' fornit and that it 'eventually goes away.' But there is little mention about endogenous Cushing's, how it is caused, and how it can be fatal if undiagnosed, misdiagnosed, or not treated properly. This nightmare doesn't always 'eventually go away' with surgical treatment either. In my case, my pituitary tumor was removed in 2014, I had a recurrence in late 2018, and gamma knife radiation in 2020. I am still not in remission and have to take cortisol blockers to control my Cushing's symptoms. I'm really kind of frustrated that this community is praising Amy for being an advocate or posterchild for Cushing's, because she's not. She doesn't have to live with this disease or the horrible aftermath that sometimes follows. And honestly...it made.headlines, everyone talked about it for a couple weeks, and now...other than this article, has anyone seen or heard from Amy about Cushing's? Not really. Is there a nation or worldwide trend happening with hashtags and commercials and new and innovative support groups being offered? No. Once again...we have to fight to be heard, understood, and taken seriously. That is the only experience I have had since Amy.came forward with her story. Which, by the way, makes me question our medical professionals even more. Amy and her care team knew she was getting corticosteroid injections, but yet they still ordered MRIs? And did she firsy have to go through blood draws, saliva tests, and 24 hr urine collections for weeks or months at a time?? If not, does this mean she bypassed all of the regular testing protocol and went straight to imaging, while thr rest of us have to fight sometimes just to be seen for Cushing's??? And then she mentioned that the MRIs were 4 hours at a time...???? What in the world?? Whoever heard of that?? And multiple 4hr MRIs at that!! I guess I'm one of few who see something bizarre and far fetched with all not this? I hope Amy does get better, and my goes out to anyone who has to deal with Cushing's in any form...but I'm sorry, she's not a Cushing's advocate. She's a body image advocate, and that's fine. Once it's out of her system, she will never step up and be a voice for the chronic illness community, because she truly does not fall into that category.
Roisin
This is truly a horrific illness one that leaves you flat like an old car battery. April 2020 Covid moved in and my then partner moved out. I then started experiencing symptoms of Cushings. Several visits to my GP, pains in my legs, my body felt as though it was cut in half one half not wanting to do what the other half did. The skin on my arms was easily damaged, bruising and taking lumps of skin off. My poor face started to look like a moon, rounded and distorted. Still no one listened. I finally asked my GP to check my thyroid, then the ball started rolling. Two years after my symptoms first started I was diagnosed with a tumor on my left adrenal gland . I was admitted to hospital for stabilization. I required 4 blood pressure tablets . I had my left adrenal gland removed. October 2022.
My tumor was benign and 3.5 cm. That was 17 MTHS ago.. To date my right adrenal gland is still asleep. I'm currently being titrated down from the high dose of hydrocortisone. My symptoms now include pains in my legs, arms, neck. The fatigue is unbelievable, now my blood pressure is dropping, i am freezing one minute and overheating the next. My teeth are breaking with a wisdom tooth removed 3 weeks ago and another filling due.. Im falling apart. At times I feel so bad I think I'm dying. You cannot plan for any event as you can't predict how you will feel. I have 4 kids the eldest 25 the youngest 9.. Its tough really tough.
Thank you so much for your advice . Take care everyone best wishes for good health . God bless. R