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  1. 1 point
    Sign Up and Enjoy Patient Benefits To join our database and to receive a $5 gift card if you qualify, please complete the form below. Currently, we are looking for patients and caregivers with many different rare conditions. Please fill out the sign-up form below and we’ll let you know if you qualify. If you are the caregiver of more than one patient, or are both a patient and caregiver, please fill out a separate entry for each and you will receive multiple gift cards. Please be aware that each entry is checked individually. Please include your correct personal phone number as we will call you to verify your information. It may take up to four weeks before you receive your gift card if you qualify. Read more about how we use your information. At this time we are accepting patients and caregivers across all diseases and conditions. However, that does not guarantee we will have surveys for you. If there are not any companies that have treatments available, or there are no companies developing treatments, then there would be no sponsors for surveys. But we are always looking for sponsors for all disease categories! Only one caregiver per household, please! That is because our survey sponsors won’t allow more than one response from caregivers in the same household. If you have more than one caregiver, you can decide which of you can do each survey. Please be aware that the rewards you earn from participating in market research, like all income you receive, is considered taxable by the IRS. We are required to submit form 1099 for each patient or caregiver whom we pay $600 or more in a year. We are proud to say that we’ve rewarded patients with over $2.1 million for participating in surveys in the past four years! Register here!
  2. 1 point
    Usually, you have to do a LOT of 24-hour UFCs to get diagnosed. One just doesn't get it. When I was being diagnosed, I did several weeks of daily UFCS. Are you seeing a good endocrinologist who is knowledgeable about Cushing's? Please keep us posted.
  3. 1 point
    I still have my gallbladder. The HPA axis is the hypothalamic–pituitary–adrenal axis. It can get a little complicated so you might just want to google it for a better understanding but basically the organs that make that up the HPA axis (hypothalamu, pituitary gland and adrenal glands) interact and provide feedback which regulate a lot of body processes such as immunity, mood, energy, emotions and most importantly stress response. For example, when someone gets stressed the hypothalmus produces corticotropin-releasing hormone (CRH) which then signals the pituitary gland to produce adrenocorticotropic hormone (ACTH) which then signals the adrenal glands to produce cortisol. Alcohol can trigger the HPA axis and over time, disrupt it which can cause higher cortisol levels. Most of the research out there is based on continuous consumption of alcohol over an extended period of time so you shouldn't t see high cortisol numbers (like Cushing's high) in someone drinking responsibly and abstaining from drinking during testing.
  4. 1 point
    I just wanted to say hello. You are in such good hands at the NIH. I too, had surgery there and they saved my life. I hope things are going well for you.
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