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From the Beginning

If you are new to this blog, here's what you need to know before you start reading.

I'm Danielle, a 30 year old Cushing's Survivor.  I have probably had Cushing's Disease since I was 15, but I was not diagnosed until I was 23.

Cushing's disease is caused by a tumor in the pituitary gland.  Cushing's syndrome can be caused by a tumor on the adrenal gland or a tumor elsewhere, in the lungs or intestines, or anywhere in your body.

I had a pituitary tumor.  It was found my senior year of college, before I had an official diagnosis but at that point, I knew I had Cushing's.



Some common symptoms of Cushing's are:

central weight gain
weight gain in the face (moon face)
striae (stretch marks that are extra wide)
excess hair growth in females
buffalo hump on the back of your neck
kidney stones
depression
mood instability
high blood pressure
high blood sugars, leading to uncontrolled diabetes
decreased immune response
poor wound healing
hair thinning
insomnia
ruddy complexion
muscle fatigue
declining school performance
memory loss
acne

If you have a lot of these symptoms, here are ways to get help:

-search for Cushing's Facebook groups, they are a great resource of people who are going through what you are or have already been through it

-www.csrf.net - The Cushing's Support and Research Foundation has great newsletters and a great network of patients who have been through it and doctors that treat people with Cushing's

-www.cushings-help.org Cushing's Help is where I got started. There is endless information about Cushing's and a forum where you can connect with others with Cushing's. They even have a list of helpful doctors who won't dismiss your concerns.

-read other people's experiences, like mine, to prepare for the years of healing you will go through before you feel like yourself again.  We want to help you through this!  It is a horrible, debilitating disease that can take your life if you let it.




Comments

  1. Hey Danielle, I'm happy to have found your blog!

    I was diagnosed with Cushings in 2006 (the worst case the endocrinologist had ever seen) to being prescribed heavy duty steroids for 10 years for migraines.

    It is now 2013 and I am not OK. I had Cushings for so long it screwed up every body system. I even got cancer as an added bonus. And gall bladder disease. I'm still very fat and very discouraged.


    I hope you have a complete recovery! I'll be reading your blog from now on.

    ReplyDelete
  2. Thanks Nellie! It's always nice to hear that you're not alone, right?

    ReplyDelete
  3. Hi Danielle,
    I'm a 27 year-old girl from Brazil and I have all Cushing's symptoms but I'm waiting for my diagnose...my exams resoults will be ready by the end of this month.
    I'm anxious to start treatment... I need to feel like myself again! I've been treating my mood instability as panic syndrome for almost a year... unsuccessfully of couser, I don't have panic, I have cushing. This is a very dificult desease to de diagnosed. I went to three differente doctors specialties until the ugly stretch marks appears and I connected them with the desease. I feel like nobody has ever heard of cushing in my city and we have very few information about it in my language.
    How do you deal with the symptons? they are devastading... i am a completely different person since it started do appear, I feel ugly, fat, alone, sad, tired....
    I am new here, I'll be reading your blog from now on. I hope you have a complete recovery!

    See you

    Cris

    ReplyDelete
  4. My 18 year old son is on the verge of being diagnosed with Cushing's. After suffering several easily broken bones over 3 years, our orthopedist and his PA started working on the WHY they broke easily. It ended with a referral to an endocrinologist who ordered numerous lab tests even before his first appointment. Cortisol and prolactin levels were elevated. Coincidentally, we had an appointment with a neurosurgeon to evaluate a benign arachnoid cyst in his brain. When he reviewed his lab work, looked at our son--and said he most likely has Cushing's. He immediately ordered a MRI for the pituitary gland as it didn't show up well enough on the previous one. He fully expects to find an adenoma on the pituitary and has said he will most likely be having surgery for it.

    All of the symptoms he has had for the last 3-4 years that we thought were unrelated....anxiety, sleep issues, easily broken bones, low testosterone, weight gain for no reason...the list goes on. His pediatrician said it was just because he was inactive. While facing brain surgery is hard to comprehend, just having a diagnosis brings an inner peace for him and our family.

    ReplyDelete

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