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Kat S (kats), Madelung’s Disease

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  I’ve just been diagnosed with Madelung’s Disease. I am a 52 year old female, who doesn’t drink alcohol. Not typical of this illness. At first I was so relieved that I didn’t have some type of cancer that spread into my lymph nodes. I am still thankful this isn’t really life threatening. I know […]

Andrew E, Madelungs Disease

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Just discovered I have Madelungs disease. trying to find any resources for dr’s that specialize in this in  southern California are near impossible to find. HOME | Contents | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio

Lee B, Ectopic (pituitary and lung tumor) Bio

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Another Golden Oldie, Lee had both pituitary and lung tumors.  This bio was originally posted 06/07/2008. ~~~ Whee1 where to start!. During 2002 noticed that I had extreme daily hair loss, weight gain even while on diet, depression and general feeling of not being well and decreased sleep and change in sleep pattern. Went to a […]

In Memory of Judy Kennedy – December 15, 2019

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  Judy died on December 15, 2019, after battling lung cancer, Atrial fibrillation, and total body weakness.  She was a great warrior for her children.     From 2008: Siblings Deal With Rare Cushing’s Diagnoses By KALEY LYON klyon@dailynews.net COLBY — As a junior in high school, Justin Kennedy began getting sick and missing school […]

Matt (MattHill), Ectopic Cushing’s

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  Diagnosis: Stage 2 small cell lung cancer causing high levels of Cortisol, low testosterone and thyroid Hi, I’m a 46 year old male academic working on US politics qlat University in England. I had 18 months of hospital referrals before my GP realised I had Cushing’s and was diagnosed in March 2020. I went […]

In Memory: Alice Baker, October 3, 2002

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Thursday, October 3, 2002 Alice died of lung cancer and Cushing’s. Judy wrote: “Monday I called to see how Alice Baker was doing and found out she had passed away Thursday. I had a long talk with Alice’s husband. He wanted me to tell everyone how much your cards and the flowers meant to Alice. […]

In Memory of Janice ~ Tuesday, September 4, 2001

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Tuesday, September 4, 2001 Double click to see these ribbons used in Janice’s memory. On the message boards, Lorrie wrote: Our dear friend, Janice died this past Tuesday, September 4, 2001. I received an IM from her best friend Janine, tonight. Janine had been reading the boards, as Janice had told her about this site, […]

In Memory of Kalyn Allen, June 28, 2017

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We lost another Cushie sister today. Kalyn Allen’s husband posted this on Facebook: This afternoon my beautiful wife and mother of my children completed her path in this life so that she may be reborn again into the next. She was surrounded by her children, family, and friends when she transitioned very peacefully. She now […]

For Rare Disease Day: MaryO, Pituitary/Kidney Cancer Bio

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  Adapted from Participatory Medicine This is kind of a “cheat” post since it’s a compilation of other posts, web pages, message board posts and some original thoughts. I’m writing it to submit to Robin’s Grand Rounds, hosted on her blog. For all of my early life, I was the good, compliant, patient. I took whatever pills […]

In Memory: Judy Kennedy – December 15, 2019

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  Judy died on December 15, 2019, after battling lung cancer, Atrial fibrillation, and total body weakness.  She was a great warrior for her children.     From 2008: Siblings Deal With Rare Cushing’s Diagnoses By KALEY LYON klyon@dailynews.net COLBY — As a junior in high school, Justin Kennedy began getting sick and missing school […]

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