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We have a new form to add your own bio!

Try it out below…

 

 

Thank you for submitting your bio – sometimes it takes a day or so to get them formatted for the website and listed on the pages where new bios are listed.

If you are planning to check the button that reads “Would you like to be considered for an interview? (Yes or No)” please be sure to read the Interview Page for information on how these interviews work.

Please do not ask people to email you answers to your questions. Your question is probably of interest to other Cushing’s patients and has already been asked and answered on the Message Boards.

Occasionally, people may comment on your bio. To read your bio and any comments, please look here for the date you submitted yours and click on the link.

Please post any questions for which you need answers on the message boards.

 

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Steve, Ectopic Bio

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I am recovering Ectopic Cushing survivor, I am 52 years old, I originally got sick when I was 22 it was 1987, I went un diagnosed for 12 years. I had every symptom there is with Cushings from the crazy weight gain to blood pressure being at stroke levels for the 12 years and terrible vision issue that I still struggle with today.

I had 2 surgeries, first I had the Pituitary surgery which left me on deaths door, miss diagnosis of Pituitary when it actually was ectopic with a nickle size tumor in my right lung between my upper and middle lobes. they removed all but a potion of my upper lobe.

I have struggled with vision issues ever since as well as depression, terrible fatigue and all of the other issues that come with having Cushings!

 

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Danielle G, Pituitary Bio

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The pituitary gland

 

During pregnancy it’s expected for women to gain weight and sometimes struggle to lose it after giving birth.

Danielle Gselmann felt her health dramatically deteriorate five years ago, soon after she found out she was pregnant.

The Gold Coast mother had suddenly gained more than 20kg, found herself losing hair, constantly breaking bones and struggling to sleep.

Making matters worse, the young mother became severely depressed and noticed an unusual-looking ‘hump’ on her back.

Danielle went with her personal trainer husband Dean to get checked out and doctors assured her she was fine, claiming the symptoms were related to her pregnancy.

However, Dean was not convinced of the diagnosis because Danielle continued to eat healthy and work out but was still feeling terrible.

After piecing her symptoms together and doing extensive research, Dean believed Danielle was suffering from Cushing’s disease.

They went to a specialist to confirm Dean’s hunch and their worst fears were realised.

According to the Healthline, Cushing’s disease is caused by a tumour on the pituitary gland in the brain. This tumour then produces an abnormally high level of the hormone cortisol.

It is an extremely rare disease, affecting 10 to 15 people per million each year.

Speaking to Sunshine Coast Daily, Danielle said the disease affected her everyday life and took a dramatic toll on her family, causing her to miss out on watching her son grow.

‘Physically my body broke down…mentally I went numb,’ she said.

‘It affected everything…I missed so many moments because I can’t remember any of it’.

On July 19 Danielle had brain surgery and had the non-cancerous tumour successfully removed.

However, it will take two years for her pituitary gland to function on its own once again, and is warned she may continue to experience the harsh symptoms.

She was prescribed steroids to help manage the dramatic change her body has to cope with low cortisol levels, the publication reported.

The Gselmann’s now hope to raise awareness of the rare disease.

They have also launched a GoFundMe page requesting support for the family to look after Danielle as she recovers.

From https://en.brinkwire.com/news/gold-coast-mother-diagnosed-with-cushings-disease/

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Summer J (Summer84), Pituitary Bio

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Hello my name is summer

When I turn 30 I started having a lot of health problems by my 31st birthday I had a kidney stone that was the size of a cherry pit. After having multiple lipotripsy used to have that kidney stone removed the doctor insisted that I go and see a primary physician, by that time I haven’t seen a doctor in quite some time I have been treated for severe pain and all they would tell me they could make me comfortable but that they could not do anything for me so I stopped going.

My first doctor’s appointment with my new primary physician she asked me why it had been so long since I’ve seen a doctor and I told her that I was scared she told me that there was nothing to be scared about within three months of my first appointment she told me that she thought I had Cushing’s and that we needed to figure out if it was syndrome or disease.

She sent me to a endocrinologist and the first thing he told me was nobody has Cushing’s don’t worry about it the in endocrionologist apologized one month later and referred me to University of California San Francisco. The endocrinologist department at the University was able to discover that it was Cushing’s Disease after taking blood from my pituitary gland , I was introduced to the neurosurgery department and we scheduled my surgery my tumor was removed 1-24-17 . I was giving steroids and an appointment the following month as I reduced my steroid use I got sicker and sicker and ended up in the hospital unable to make it to my doctor’s appointment.

Unfortunately I was not prescribed anymore steroids. When I was finally well enough to make the journey to my doctors they realize their mistake apologized and changed their policies unfortunately during that year I was very sick in and out of the ICU. Neurosurgeon and my new endocrinologist were very surprised that I was able to survive not having any support. They had mentioned that they believe I had a very high long term exposure and that I had gone into shock multiple times. Its now been a year in a couple months and I’m feeling better , Im still having incredibly fatigued and have horrible insomnia but things are looking up.

PS .if this doesn’t make sense I have a little brain fog sorry…

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Patty, Pituitary Bio

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April is Cushing’s Disease Awareness Month. I would like to help raise public awareness about this debilitating illness. It is so misunderstood by most medical professionals that their patients often suffer for many years without a correct diagnosis and, in far too many cases, never get a diagnosis at all.

I personally suffered from a common list of Cushing’s symptoms for years. I sought help from medical professionals and was told nothing medically was wrong with me other than I was menopausal and needed to lose weight.

I gained 70 pounds in a short amount of time due to a tiny tumor in my pituitary gland which was overproducing the hormone ACTH, causing Cushing’s.

Besides rapid weight gain, my forearms bruised. I had a red face and neck, grew a hump on the back of my neck. My belly swelled to pregnancy size. I had high blood pressure.

No matter what I ate, how much I worked out, or how much I explained to everyone around me that I was not doing this to myself, no one believed me. I went about five years not sure what I would do because my body was slowly breaking down and was in really bad health.

In 2016 my back went out and I needed surgery. I was at a followup visit with a PA when he asked if I knew why I blew my back out.

Desperate, I got emotional and told him my story. I told him I thought I had Cushing’s disease based on my own internet research. He was the first person to listen to me and gave me a referral to see an endocrinologist. The endocrinologist took one look at me and knew without testing, although we did test and it was confirmed.

I met with my neurosurgeon and ENT and had surgery June 2017 to remove a 1 centimeter pituitary tumor, which lies at the base of your brain. I will forever be grateful to the team of doctors who saved my life and also to the PA who listened to me.

Life is slowly getting back to normal (or my new normal, I should say.)

Shared from https://www.thecamarilloacorn.com/articles/disease-may-be-hard-to-diagnose/

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Angie (Angie), Pituitary Bio

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My name is Angie.

I went to the Dr. in about Sept. of 2014 and was diagnosed with diabetes. I hadn’t seen my primary care Dr. in awhile due to her being out on pregnancy leave. She was there that day and she looked at me and told her nurse to set me up for labs to be tested for Cushings. She told me I had the look of a Cushing patient. I had gained about 50 lbs in about 6 months. I had the moon face and all the weight was in my stomach. My labs came back positive for Cushing. I was already seeing an Endo Dr. and she sent the labs to that Dr.

My Endo Dr did test on me and within 6 months they were positive I had Cushing. It showed I had a tumor on my pituitary gland. I surgery on my pituitary gland on April 11,2017. The endo dr at the hospital I had surgery at told me that the surgery was unsucessful I still had Cushing. They did a MRI in Oct. of 2017 and it showed I have 2 tumors on the gland now. I’m going for another MRI.

On May 7th to update so the surgeon will know if he’s going to take half of the gland or the whole gland. So that’s where I stand at the moment. I have diabetes, high blood pressure, high cholesterol,trouble with my bladder, kidney failure and my heart doesn’t relax its staying stiff all the time and causing me to have chest pains daily. I also have chronic migraines.

I joined a group on facebook when i found out i had it and read alot and asked alot of questions. People that don’t know anything about it needs to read up on it. I sent a link of the Cushing’s site to everyone in my family to read up on it. Some have and some haven’t.

Theres still alot I don’t know and I think it great that the ones that does have it and know alot more than some of us is a blessing.

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Autumn, Pituitary Bio PLUS Cushing’s Awareness Stickers

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A long-time member of the Cushing’s Help message boards, AutumnOMA , gave me permission to share info about these wonderful Cushing’s Awareness Stickers she has made:

CUSHING’S AWARENESS RIBBON STICKERS ARE HERE and you can get your own!!!

April is CUSHING’S Awareness Month. In honor of raising awareness, I decided to use my original Cushing’s Awareness Ribbon art to create a sticker.

In 2005, just after my pituitary surgery, while I was at home recovering and suffering thru the weening process, I decided to create an artful awareness ribbon that spoke to the beauty within each Cushie Warrior. This is why…

Cushings’s changes us. Emotionally, spiritually and physically. It takes a toll. I felt wounded beyond my medical issues. I no longer recognized my own face staring back at me from the mirror. My body took on a form of its own that was unrecognizable to me. My heart and soul ached for what I had lost because of this disease. I felt judged on appearance alone. I forgot who I was. I forgot how to see past the physical things that I couldn’t control and the daily pain. I forgot the carefree beauty of simply being alive.

I had struggled for years for a diagnosis and almost lost myself, my mind and everything I held dear. But I had made it through to the other side. Diagnosis and surgery – finally! But it was still difficult. I needed to know that I could find my inner strength to keep at it. I had to trust in my own strength and resilience to adjust to changes and find joy in the life I had. I had to believe that I had not endured what I had for no reason.

The simple truth of the matter was that I wasn’t sure how to do any of that. It felt too big; too hard. The only thing I knew with certainty was that if I could be brave enough to share my story and help raise awareness for the rare disease I was living with, maybe I could help one person…and helping one person – just one person- know they were not alone…well that was reason enough to try.

And so I set out to raise awareness and hopefully offer support to other by means of sharing my journey.

The first thing I decided was that I wanted an awareness ribbon to wear. I wanted to proudly display (like all those pretty little pink ribbons that are everywhere) that I too survived a life altering disease and I did it with little support.? There wasn’t a large Foundation like Komen, raiding money to find a cure for me. Heck, Doctors didn’t even know what Cushing’s was, let alone the vast majority of the public in general. But I wanted to pin something pretty on my shirt. I wanted an awareness ribbon that embodied hope and beauty. I wanted to wear a ribbon that would inspire people to ask me what it stood for. And so…I made my own.

As an artist, I like to create things that make me feel something. I like to create from a place of inspiration that feels good and comfortable to my soul.

I used to think that flowers, cut, in a garden or otherwise were a waste of time, effort and money because the bloom and die so quickly. But what I came to realize was that was what in fact made them so special. No matter how short the length of time they were around was, they still grew and bloomed into a spectacular show (even if for just a short while) and brought smiles and beauty to the world. What a wonderful gift to be grateful for.

For me, flowers never fail to make me smile. They are fragile, but but resilient. They are colorful and happy. They freely give their beauty for all to enjoy…they were perfect in my mind for an awareness ribbon. And from that thought came the piece of art that is the Cushing’s Awareness Ribbon or blue and yellow flowers.

I am very proud of it. And I am proud to offer these stickers with my art ribbon to help raise awareness.

These stickers are 2.5”x2.5” full color vinyl circles (approximately the size of your palm.).

Profits made from the sale of these stickers will be donated to help fund organizations that work hard to offer continued support and help for those struggling with Cushing’s – whether that be getting a diagnosis, making it through recovery or learning to live with the changes the disease brings about in our lives.

If you would like to purchase stickers please see the attached picture that include all the details about pricing and payment.

Here’s to us all remembering our inner beauty and finding a way to let it shine despite this disease…or maybe because we have this disease and realize how amazing we are as survivors!

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