Home

We Have a New Bio Form!

Leave a comment

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.

 

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

In Memory ~ Sarah Fraik

Leave a comment

in-memory

 

Sarah recently had surgery to remove a tumor from her pituitary gland in the hopes of treating her Cushing’s Disease.  She died on June 13, 2011 after a brief illness at the age of 28.

More information will be provided when it becomes available.

~~~~~~~

Sarah F’s mom posted this: “we will be setting up an account at the royal bank tomorrow afternoon for sarah. we are planning on having a bench put in her name at transfer beach in ladysmith after we get her home. if you would like to help you can make a donation instead of sending flowers. we will post when we have everything set up. thank you everyone for your support and kind words for sarah…..”

Also from Sarah’s mom: “a account is set up for sarah fraik at any royal bank the number is 02000 5000823 any donation is welcome to help with bringing sarah home and getting a bench with her name put on it at transfer beach ladysmith thanks everyone.”

Beth Grant writes: “I already have asked her about how people from out of the country can donate and I’m still waiting to hear back. But my offer also stands to have people paypal me or send cheques and I can just go to the bank here and deposit it to the account. There’s an option to Send Money, so you just click on a few things and it gets sent. I’ve sent and received through paypal many times and never had trouble.”

Conversion from US to CAN: http://www.advfn.com/currency-converter/us-to-canadian-dollar.html

~~~

From the Acromegaly Community:

Taking a Lesson From a Tragic Loss

on Wednesday, June 15, 2011. Posted in Blog

Wayne Brown
AcromegalyCommunity.com

Last night I was at an open-air concert; and while waiting for the show to start, I was unexpectedly faced with mortality.  Everyone at the show was fine, but when I was reading social networking posts, I kept reading people’s messages of peaceful rest to a woman I didn’t know; but I could totally relate to her struggles with a rare disease.  Sarah, a young woman dealing with the effects of Cushings Syndrome, passed away from a head cold- a medical complication at the ripe old age of 28.  I didn’t need to know Sarah to know that this was just wrong!

Based on what I have read from many of Sarah’s friends, I got a brief snapshot of the situation.  Not only was she a very special woman that many people loved, her passing was made more tragic because maybe it was avoidable.  It seems that several people were concerned that the quality of her medical care was at least partly to blame for her early passing.  Now I did not know Sarah or her issues to agree or disagree, but it brings up a really important topic of discussion for the rest of us: what is a good relationship with your medical professional?  For those who are unfamiliar, Cushings Syndrome is a hormonal disease that impacts people who have a consistently high exposure to cortisol (a hormone released into the body as a response to stress).  I have had cause to learn a lot about Cushings because of the number of Acromegaly patients who have to juggle the effects of both diseases.

While I know this discussion can be uncomfortable, I would like for you to ask yourself honestly: DO YOU TRUST YOUR MEDICAL PROFESSIONAL?  Please understand the question I am asking is different than whether you like your doctor.  While it is nice if you like your doctor, it is not as critically important that you like your doctor, as it is that you trust him or her.  I promise you that I am not golfing buddies with any of my medical professionals; but… I am confident that they are providing me with the best possible medical care I could ask for, without my traveling to a dozen other cities.  Ultimately, this is an essential question you need to answer for yourself because your answer can directly impact the quality of your health care, and therefore the length and quality of your overall life.

Now does trusting your doctor mean they know everything there is to know about all things medical?  NO!  Just because you trust your doctor or nurse does not guarantee that they know everything about every disease you may ever have.  Willingness to learn accentuates, not lessens a doctor’s credentials as a diagnostician.  Many of us have had cause to teach our doctors something about our disease not covered in the textbooks yet.  When I was growing up, I knew a doctor’s wife who used to love to joke that ‘that’s why it’s called practicing medicine.  They have to keep trying till they get it right.’  It is impossible for any one medical professional to know everything about everything.  The question you need to answer for yourself is whether you trust them to listen to what you say and help you to make your life more pleasant, because of or in spite of your medical situation.

Sadly, for some of us, our medical issues are not a joke but a depressing reality- that we have to go years before we find the right medical professional who can both treat us medically AND handle our personalities in a way that will help us to trust our doctor/nurse/physician assistant.

Now, if it is true that the doc is merely practicing, why is our trusting them so essential to the relationship?  That is simple.  Honesty.  If you are anything like me, you would rather go to a medical office than a psychic for your medical care.  If you are withholding from your doctor, for any reason, you are detracting from your own medical care – and making it nearly impossible for your doctor to properly treat you!  I am not saying you should call your doctor’s office because you stubbed your toe getting into bed last night and your nail is bruised in the morning, but if you stubbed your toe last night and you were in so much pain that you woke up and took seventeen aspirin, this is an issue worthy of a chat.  Your medical professionals need to understand who you are, how you feel, what your pain threshold is, and how you manage your medical issues when he or she is not around (yes, this means your OTC treatments AND if some of your self-treatments do not necessarily come from recognized pharmacies- while this may be an awkward conversation and you may get scolded, such decisions by you can effect your treatment too!).  Medical professionals and their patients must know they can trust each other.

Ultimately, we are the patients- its kind of like being the customer at a store.  If you want to do hours of research before you buy the best can opener, or if you want to consistently look over your doctor’s shoulder, that is your right; but ultimately you need to have faith in the purchase you make at the store, just as you need to have faith in your doctor’s course of treatment.  If you do not feel comfortable enough doing that, then you have a decision to make: is your lack of trust in the doctor their fault, or is it yours (as the patient)?  Again, not an easy question to honestly answer, but essential in our long-term well-being!  If you have been withholding too much from the doctor, waiting for the doc to miraculously figure out what’s wrong seems both unlikely and unfair- and largely a mess of your own doing.  Going to another doctor is simply going to slow your treatment, and likely perpetuate the problem.  It is not the doctor’s fault that you are not honest with them about your issues.  Open up with your doctor and have a frank discussion- see where things go from there.  But if you are honest with your doctor, and you still feel like the doctor is either uninterested, unable or unwilling to figure out your issues, or is flat out too busy to give you the focus you require and deserve, well then you need to look at possibly seeking a new medical professional.

Just remember, starting with a new doc can be difficult.  If he or she is popular, you might wait at least a month or two just to get that first appointment where no treatment might legitimately get started. During this time that you wait, your issues are not being treated at all.  On top of that, you and your new doc both need to figure each other out, and again you need to try to build that trust and understanding with a new doctor and staff, working toward a momentum of medical stability.  All that being said, if you are not happy, and are ready for the switch, then go for it!  Remember, you are most responsible for your own medical care, since you are the person most greatly invested in your own well-being!  Don’t stay with a doctor simply because you are afraid to leave.  If you are ready to move on to a new doctor’s office, just make sure you are doing it for the best reasons.  Hopefully your new doctor’s office will offer you the ability to trust and be totally forthright.

I am just saying that if you are dealing with some sort of extraordinary medical condition, please invest your time to be totally honest with your physician(s).  Talk with him or her in a frank and honest way.  If your disease has major issues that are kind of sensitive to talk about, and you are afraid to talk face-to-face with your doctor but feel you can be more frank with the nurse or physician assistant, then do that!  If the issue is particularly awkward for you, then at the very least, keep a journal and share that with your doctor’s office.  At least the information is being conveyed.  While there are preferred methods of sharing, getting the information is more essential than the method of delivery.

I don’t know what the facts are that surround Sarah’s case, but it is a tragedy any time a 20-something person passes away.  Don’t let her passing be for nothing.  We can learn from her.  Take care of yourself medically, and work to foster a relationship of openness and trust with your medical professionals.  Without trusting our medical professionals, how can we expect them to treat us in a way to actually improve our health?  And at the end of the day, what is more important than our health?  Dare I say it… nothing.

In Memory: Jessica Lee Pierson, August 29, 2018

Leave a comment


Jessica Lee Pierson, 35, of Harrisonburg passed away Wednesday, August 29, 2018 from complications of Addison’s disease.

Jess was born in Fredericksburg on June 27, 1983, to Janet Pierson and her late husband, Charles Parke Pierson. Jess attended James Monroe High School where she was a stellar athlete and honor scholar. After graduating from James Madison University, she spent two years on the mission field in Peru, sharing her love for the Lord. Residing in Harrisonburg, Jessica excelled at her job as a social worker for Rockingham County and nurtured her clients with compassion, respect, and gentleness. She was an active member of Covenant Presbyterian Church, continually embraced by her family of faith who journeyed with her since her days as a college student.

Jess had a beautiful smile, and a sweet and simple demeanor that won the hearts of many, who even now are being inspired by her witness of faith. She was utterly devoted to and dearly loved by her close-knit family.

Survivors include her mother, Jan Pierson and husband Frank Graebner; brothers Daniel Pierson (Anne) and Christopher Pierson (Elissa); and sister Emily Moore (Michael). Her signature gift of loving thoughtfulness, especially in her role as “Tia” to her beloved niece and nephews, Mary Claire, Lukas, Nicholas, and Parke, overflowed through her kindheartedness, unselfishness, and generosity, and will never be forgotten.

Interment will be held at 10 a.m. on Saturday, September 1 at Oak Hill Cemetery. A service to celebrate her life will follow at 11 a.m. at Fredericksburg Baptist Church.

In lieu of flowers, memorials may be made to Missions Ministry of Covenant Presbyterian Church, 32 Southgate Court, Harrisonburg, VA 22801 or Fredericksburg Baptist Church.

From https://www.covenantfuneralservice.com/obituary?id=319105

Steve, Ectopic Bio

Leave a comment

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!

 

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Danielle G, Pituitary Bio

Leave a comment

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/

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Summer J (Summer84), Pituitary Bio

Leave a comment

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…

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

sjw (Jane W), Adrenal Bio

Leave a comment

My name is Jane and I am 76 years old. I was recently diagnosed with Cushing’s Syndrome after years and years and years of suffering symptoms.

My doctor for the past 7 years said that I had pre diabetes, high cholesterol, high blood pressure, chronic kidney disease, fatty liver, asthma, emphysema, obesity, anxiety and depression. She missed that I have actual diabetes and often told me that if I would only eat right a lot of these problems would go away. She missed the leaky heart valve, COPD, and most important, the Cushing’s.

in 1997 another doctor told me that I had a harmless tumor on top of my kidney. He said it was nothing.I shouldn’t worry about it, just forget about it, it was nothing, That was about the time my weight began to go out of control. So for at least 30 years I have not known what was wrong with me.

I spent 2 weeks in the hospital with depression while on a 600 calorie diet and I gained weight. My new endocrinologist said he was scared when he first saw me. But he has promised to take care of me because nobody else has. He has started me on Korlym and I was feeling a lot better at 3 weeks, after losing 17 pounds with no effort. Now though, I have started a new trial. This new drug does not block the progestin so in the long run will be better for me.

We shall see. I can only hope.

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Pam M (mapgirl23), Undiagnosed Bio

Leave a comment

I am the mother of an 18 year old daughter who I suspect has Cushing’s. Kristy was diagnosed with Tourette’s Syndrome when she was in the 5th grade. She suffers from mild to severe motor tics.

Fast forward to the end of her Freshman year and high school when she started to develop depression, anxiety and unexplained episodes of vomiting along with rash covering her entire body which the doctors just said was eczema She also developed stretch marks all over her breast, abdomen and thighs. I asked the dermatologist and she said she was just growing. She was the same size she had been for the last 2 years and was actually losing weight. I took her to a neurologist who diagnosed her with Cyclic vomiting syndrome. By May of the following year she was seeing a therapist and then went to see a psychiatrist who put her on Prozac. Her rash immediately cleared up. I asked the doctor about cortisol I figured her body must be producing to much and he said yes it was causing a stress rash.

Her mood improved temporarily and everything was blamed on the Tourette Syndrome. She started gain weight and by her Senior year she had gained 60 pounds and she barely ate. Her face became moon shaped and the majority of her weight was carried in the abdomen area. Her anxiety continued to get worse along with severe fatigue. We saw more doctors who just told her to lose weight and go to therapy to learn to live with her symptoms because there is nothing they could do for her. In June we found a new psychiatrist at U of M who increased her dosage of Prozac to the max dosage. She still has know improvement and she even attended anxiety classes to try to learn to cope.

She is now suffering from severe brain fog , has difficulty speaking and gets confused easily. In November she started having vomiting episodes and a rash again so that brought me back to thinking about her cortisol levels. I started searching the internet once again and stumbled upon Cushings once again. The light bulb went off! I ran downstairs and checked the back of her neck and there was a Buffalo Hump that wasn’t there in June. That is when I knew we may have found the answer.

We saw a new family doctor in December and she took us seriously and ordered Prolactin, testosterone, Thyroid, 24 Hour free urine cortisol and a Cortisol blood test. The Prolactin and Urine Cortisol came back elevated. The blood Cortisol 8am test cam back at the highest end of normal. We met with her psychiatrist and he agrees that it may be Cushings. We will see him on Feb. 1 and he is going to review her labs with a endocrinologist. We have an appointment with an endocrinologist on March 2 and are waiting to get into another endocrinologist at the University of Michigan. Praying for an answer!

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Older Entries

%d bloggers like this: