@CSRFnet

Supporting patients in all ways; direct peer contact, trustworthy science-supported resources, community events, access to patient voice research opportunities.

 Worldwide; Homebase Atlanta GA
csrf.net
Joined October 2014
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New post on CSRF: Sandra M. - Embrace the Journey csrf.net/patient-stories/san…

Sandra M. - Embrace the Journey - CSRF - Cushing's Support & Research Foundation

Hi, my name is Sandra, I am 34 years old, I am from Portugal and I am a nurse.  What would I say to a person that just has been diagnosed with Cushings? “You are not alone” and “It will be a long...

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New post on CSRF: Lauren I. csrf.net/patient-stories/lau…

Lauren I. - CSRF - Cushing's Support & Research Foundation

Until fourth grade, I had always been one of the tallest girls in my class. However, that year my parents noticed that my growth suddenly slowed. They immediately began to schedule appointments with...

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New post on CSRF: CSRF Interviews One of Its First Members: Neddy Zaleski csrf.net/patient-stories/csr…

CSRF Interviews One of Its First Members: Neddy Zaleski - CSRF - Cushing's Support & Research...

Leslie Edwin Neddy Zaleski joined CSRF in 1996 as one of the first official members when the organization was less than a year old.  We conducted a mail outreach project early in 2020 to connect with...

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New post on CSRF: Bridget H. csrf.net/patient-stories/bri…

Bridget H. - CSRF - Cushing's Support & Research Foundation

My name is Bridget, and I’m a 31-year-old living in Chicago, IL. I was diagnosed with ectopic Cushing’s in August 2019 and am now a little over one-year post-op. I had a partial lobectomy to remove a...

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New post on CSRF: Cushing's and Blood Sugar - What's the Connection? csrf.net/doctors-articles/cu…

Cushing's and Blood Sugar - What's the Connection? - CSRF - Cushing's Support & Research Foundation

I am writing this article from two perspectives- as a Diabetes Care and Education Specialist (CDCES) and as a person who has successfully recovered, hopefully forever, from Cushing’s disease (pitui...

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New post on CSRF: Doctors' Answers csrf.net/doctors-answers/doc…

Doctors' Answers - CSRF - Cushing's Support & Research Foundation

Q:   When a patient who has not had cortisol testing yet but describes the way they feel as “adrenaline surges” or “raging cortisol”, is there anything else that could be causing a symptom like this?...

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New post on CSRF: Three Takes on the COVID-19 Pandemic csrf.net/coping-with-cushing…

Three Takes on the COVID-19 Pandemic - CSRF - Cushing's Support & Research Foundation

There has been a lot of research related to the pandemic’s effects on patient populations over the last year. Many journals temporarily bypassed lengthy review periods to get COVID data disseminated...

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New post on CSRF: Medications for Cushing's - Old and New: Part One in a Two-Part Series csrf.net/coping-with-cushing…

Medications for Cushing's - Old and New: Part One in a Two-Part Series - CSRF - Cushing's Support &...

The first line of treatment for endogenous Cushing’s (caused by a tumor inside the body) is surgery to remove the tumor. More often than not, though, the patient’s medical journey does not end there...

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A breakdown of the new Medicare law, by our partner @PAN_Foundation panfoundation.org/pan-founda…
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We feel seen! Sharon Terry of Genetic Alliance goes hard for rare patients everywhere and makes the ENTIRE case for registries led by patient organizations. forbes.com/sites/ashoka/2022…
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We are relieved and encouraged when we see efforts like this to educate and connect people to how Cushing's affects everything and everyone in our lives far beyond the clinical data captured in the office setting. @MedStoriesTV medicalstories.tv/title/cush…

Cushing's Disease | Medical Stories

Today Alyssa is back to her demanding athletic training and managing very well despite having Cushing’s Disease. Here is her story.

medicalstories.tv
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Great information for patients facing transsphenoidal surgery by Drs. Raj Mukherjee and Nick Rowan (Johns Hopkins) youtu.be/rIzWWLJ-B7g
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In honor of Cushing's Awareness Day, a patient video from Recordati Rare Diseases. youtu.be/vKGvwLG9KI4

Recordati Rare Diseases 2022 Cushing's Awareness Day video

Enjoy the videos and music you love, upload original content, and share it all with friends, family, and the world on YouTube.

youtube.com
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Today is Cushing's Awareness Day! Hug a Cushie, and help us work toward faster diagnosis, better prognosis, and kinder understanding.
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New post on CSRF: Michelle B zpr.io/Wg3pJtQYBKhw

Michelle B - CSRF - Cushing's Support & Research Foundation

Since I was a young teen I have had endocrine problems. I was diagnosed at 13 with PCOS. I have seen an endocrinologist every 6 months since that time, I am now 39 years old. I spent all of my teen...

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New post on CSRF: Kate W zpr.io/zbPL4F3LzrZ4

Kate W - CSRF - Cushing's Support & Research Foundation

For years I fought my weight. Every year my PCP would encourage more exercise or healthy foods. In college, although I was playing softball and working out daily, I still gained. Then at once, I went...

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New post on CSRF: Amanda P zpr.io/XYrYAzpUiYjE

Amanda P - CSRF - Cushing's Support & Research Foundation

It’s tough to know where to begin. The more I find out about Cushing’s, I think about symptoms I myself dismissed for years, or blamed other things. I found ways to cope. I had one pregnancy to term,...

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New post on CSRF: Joanna zpr.io/F8FqDJFdyBFk

Joanna - CSRF - Cushing's Support & Research Foundation

I don’t exactly know when the little bugger in my head started to grow, but I sure know it caused a lot of troubles for me over the course of at least 5 years. I had been very active from about 2012...

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New post on CSRF: Tina L zpr.io/4VgFChhHgYjN
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New post on CSRF: Jaci H. zpr.io/t2BJqDv7pLYQ

Jaci H. - CSRF - Cushing's Support & Research Foundation

Cushing’s Adventure A few years ago one of my uncles needed a kidney. I was the correct blood type so I applied to see if I was a match. His clinic said I needed to lose about thirty pounds before...

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