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Found 5 results

  1. We have an opportunity for you to take part in a Acromegaly and Human Growth Hormone Deficiency (GHD) Study for patients and caregivers. Our project number for this study is IQV_6382. Project Details: Survey is 20-minutes long $35 Reward Things to Note: We recommend using the web browsers Google Chrome or FireFox Study is open to patients and caregivers Please do not share study links One participant per household only Want to share this opportunity? Let us know and we can provide a new link Please use a laptop/computer ONLY. No smartphones or tablets - Preliminary questions are mobile friendly! Save this email to reference if you have any questions about the study! If you have any problems, email lejla.zonic@rarepatientvoice.com and reference the project number. If you are interested in this study, please sign up for Rare Patient Voice here: https://rarepatientvoice.com/CushingsHelp/ Thanks as always for your participation! Please be aware that by entering this information you are not guaranteed that you will be selected to participate. As always, we do not share any of your contact information without your permission.
  2. I just signed up for this because it may be helpful for researchers at the NIH and elsewhere to learn more about Cushing's, cancer, whatever else they can learn from my history. Over 35 years ago, I agreed to be a part of a study at NIH so they could learn more about Cushing's. I consider this to be a larger, easier part of what I did back then. From my bio: https://cushingsbios.com/2018/10/28/maryo-pituitary-bio/ As luck would have it, NIH (National Institutes of Health, Bethesda, Maryland) was doing a clinical trial of Cushing’s. I live in the same area as NIH so it was not too inconvenient but very scary at first to think of being tested there. At that time I only had a choice of NIH, Mayo Clinic and a place in Quebec to do this then-rare pituitary surgery called a Transsphenoidal Resection. I chose NIH – closest and free. After I was interviewed by the Doctors there, I got a letter that I had been accepted into the clinical trial. The first time I was there was for 6 weeks as an inpatient. More of the same tests. There were about 12 of us there and it was nice not to be alone with this mystery disease. Many of these Cushies (mostly women) were getting bald, couldn’t walk, having strokes, had diabetes. One was blind, one had a heart attack while I was there. Towards the end of my testing period, I was looking forward to the surgery just to get this whole mess over with. While I was at NIH, I was gaining about a pound a day! The MRI still showed nothing, so they did a Petrosal Sinus Sampling Test. That scared me more than the prospect of surgery. (This test carries the risk of stroke and uncontrollable bleeding from the incision points.) Catheters were fed from my groin area to my pituitary gland and dye was injected. I could watch the whole procedure on monitors. I could not move during this test or for several hours afterwards to prevent uncontrollable bleeding from a major artery. The test did show where the tumor probably was located. Also done were more sophisticated dexamethasone suppression tests where drugs were administered by IV and blood was drawn every hour (they put a heplock in my arm so they don’t have to keep sticking me). I got to go home for a weekend and then went back for the surgery – the Transsphenoidal Resection. I fully expected to die during surgery (and didn’t care if I did) so I signed my will and wrote last letters to those I wanted to say goodbye to. During the time I was home just before surgery, a college classmate of mine (I didn’t know her) did die at NIH of a Cushing’s-related problem. I’m so glad I didn’t find out until a couple months later! November 3, 1987, the surgeon, Dr. Ed Oldfield, cut the gum above my front teeth under my upper lip so there is no scar. He used tiny tools and microscopes. My tumor was removed successfully. In some cases (not mine) the surgeon uses a plug of fat from the abdomen to help seal the cut. Afterwards, I was in intensive care overnight and went to a neurology ward for a few days until I could walk without being dizzy. I had some major headaches for a day or two but they gave me drugs (morphine) for those. Also, I had cotton plugs in my nostrils. It was a big day when they came out. I had diabetes insipidus (DI) for a little while, but that went away by itself – thank goodness! I had to use a foam product called “Toothies” to brush my teeth without hitting the incision. Before they let me go home, I had to learn to give myself an injection in my thigh. They sent me home with a supply of injectable cortisone in case my level ever fell too low (it didn’t). I was weaned gradually off cortisone pills (scary). I now take no medications. I had to get a Medic Alert bracelet. I will always need to tell medical staff when I have any kind of procedure – the effects of my excess cortisone will remain forever. I went back to the NIH for several follow-up visits of a week each where they did all the blood and urine testing again. After a few years NIH set me free. Now I go to my “outside” endocrinologist every year for the dexamethasone suppression test, 24-hour urine and regular blood testing. Health discoveries come from research. Research starts with you. Join the largest and most inclusive health research initiative of its kind. You could help researchers find answers to the most pressing health questions. The All of Us WEAR Study has begun! As a part of this optional study, you could receive a new Fitbit® to wear. All of Us will be able to get the data the Fitbit collects to help researchers understand how behavior impacts health. Want to help others, too? Sign up at https://go.joinallofus.org/
  3. Today is #RareDiseaseDay 2017! Today, with events taking place in over 90 countries all around the world, we hope to raise more awareness than ever for rare diseases! With the theme of research, and the slogan, 'With research, the possibilities are limitless', #RareDiseaseDay 2017 is an opportunity to call on all researchers, universities, students, companies, policymakers and clinicians to do more research and to make them aware of the importance of research for the rare disease community. This year's Rare Disease Day video, which has been viewed over a hundred thousand times and translated into over 30 languages, draws a parallel with a routine that many of us go through multiple times a day - searching for an answer on the internet. The video highlights how isolating it is when you search on the internet but receive the response 'your search had no results'. It also highlights the hope and promise that comes with additional research into rare diseases, something that must be continuously strived for. You are still able to participate in raising awareness of the day and be part of the change, by sharing the video, the poster, or any Rare Disease Day material on your Facebook, Twitter or other social media platforms. This year, on the tenth edition of the day, Rare Disease Day events will be held for the first time in four African nations, Botswana, Nigeria, Senegal and Sudan. Events will also be held for the first time in Saint Pierre and Miquelon.
  4. http://www.alltrials.net/2014/guest-post-people-with-rare-diseases-need-results-from-all-trial/ Guest Post: People with rare diseases need results from all trials 7th April 2014 By Rob Pleticha is the Online Community Manager of RareConnect.org, a EURORDIS project This is a personal opinion The International Rare Diseases Research Consortium plan to have 200 new rare diseases therapies by year 2020. In Europe a disease or disorder is defined as rare when it affects fewer than 1 in 2000 citizens.(1) Researchers studying rare diseases have difficulty gathering a sufficient number of people to join clinical trials in order to reach statistically significant results that can impact treatment. Clinical trial transparency and sharing of clinical trial data is fundamental in advancing rare disease research.
  5. Curcumin acts as anti-tumorigenic and hormone-suppressive agent in murine and human pituitary tumour cells in vitro and in vivo http://erc.endocrinology-journals.org/content/16/4/1339.full Also Growth suppression of mouse pituitary corticotroph tumor AtT20 cells by curcumin: a model for treating Cushing's disease. http://www.ncbi.nlm.nih.gov/pubmed/20405005 And Curcumin (diferuloylmethane) inhibits cell proliferation, induces apoptosis, and decreases hormone levels and secretion in pituitary tumor cells. http://www.ncbi.nlm.nih.gov/pubmed/18450960 After eating curry in my eggs and tuna every chance I get I've noticed a difference in certain things. I know that there is evidence to suggest curcumin is anti carcinogenic and anti inflammatory and I attribute the changes to the anti inflammatory effect. But I still got curious....so I decided to look up turmeric/curcumin and pituitary tumors and this is what I found. Just thought it was interesting.
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