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Everything posted by Jayne

  1. Mary, I am hoping that a solution can be found to keep this website open. It has so much knowledge for so many undiagnosed cushies and holds too many memories for me. No where else can I look to find "In Memory" for all the cushie friends I've met and known for so many years. it is almost like a high school yearbook. I am not on any other social media. You have touched so many thousands of peoples lives with this site. Jayne
  2. Happy National Cushing's Awareness Day to you!!! I was so happy! My sister called me this morning to wish me the same. She' so thoughtful. She said she'd listen to the web-cast tonight at 9:00, if her kids got to bed on time. Jayne Cushing's Awareness Advocate
  3. INHOFE DESIGNATES ?NATIONAL CUSHING?S SYNDROME AWARENESS DAY? April 3, 2008 WASHINGTON, D.C. ? U.S. Senator Jim Inhofe (R-Okla.) today announced the designation of April 8, 2008 as ?National Cushing?s Syndrome Awareness Day.? Inhofe?s resolution (S. Res. 498) creating the designation passed the Senate last night by unanimous consent. Inhofe introduced this resolution to broaden public awareness and show his continued support for those suffering from this disease. ?Cushing?s syndrome often goes undiagnosed or misdiagnosed, many times leading to death, because the initial symptoms are shared with a number of milder illnesses,? Inhofe said. ?Since awareness is low, doctors do not always run the tests necessary for diagnosis, and patients do not know to ask for them. It is my hope that ?National Cushing?s Syndrome Awareness Day? will help Oklahomans and everyone suffering with this disease to receive the best possible health care.? Cushing?s Syndrome is an endocrine or hormonal disorder. It is caused by over-exposure of the body?s tissue to high levels of the hormone cortisol. An estimated 10 to 15 people per million suffer from this debilitating disease. Common symptoms include abnormal weight gain, skin changes, fatigue, diabetes, high blood pressure, and depression. Over-production of cortisol is commonly associated with the treatment of asthma, rheumatoid arthritis, and lupus. Additionally, delayed treatment of Cushing?s Syndrome significantly reduces treatment options, such as radiation therapy. Thus, it is imperative that both doctors and patients heighten their awareness of Cushing?s Syndrome.
  4. Cheryl, All the info for a National Cushing's Syndrome Awareness Day, 2008 can be posted on this site as well. There are so many wonderful and loving people on this site that will benefit from being able to access all the info, and a copy of the letter and of the resolution right here. So many people can reply and send congratulations to all cushies all over the world. Even our angels in heaven can see it here! The pituitary and other cushing's groups can view every comment, too. This is a great idea since the message boards are not up and running for your organization. Jayne Cushing's Awareness Advocate
  5. Yeah, Yeah Hip, Hip, Hooray! Congress passed our AWARENESS DAY! Cushies all over can be happy and celebrate! Jayne
  6. I know Sue is Happy OUR day is happening again!!! With love to Sue, Jayne
  7. Just trying to keep the memory of Sue alive. With love, Jayne
  8. Hey, you guys are great!!! Thanks. steal away... the other site has a write up on how i put the booth together. I thought it was easy, but I used to be an elem teacher. Hi Jo! Things are behaving. I just wish I had more energy, I still need naps everynow and then. Not sure if it's running and trying to keep up with my kids. Thanks for asking. Please Pm me if ya'll go back to NIH. As for NIH, I am not sure when they will have another health fair. keep peeking on these boards for info or go to NIH.com. Oh yeah-- I called another place having a health fair in March. They wanted $$$$ 475 from me to rent space!!! HA As for the booth itself, there were around 300-350 women attending. I passed out my own flyer( with symptoms, information sources, web sites, and brief overview) to to all who whould take it. This is my 4th year at the womens forum, so there is about a 75 person turn over. The day is so wonderful many ladies return year after year. I had about 25 women stop and ask more questions and several conversations. I really do so much better with phone conversations if any one really needs help with advocacy. PM your phone number and the best times to call. I can answer more questions that way. Always remember to put out chocolate at your booth! Dark chocolate by dove is "healthy" Jayne
  9. I'm just going to add my 2 cents worth of knowledge. When I inquired about a National Day- initially I was told both the House and Senate need to pass a resolution and have it approved by the president. Then I was told after further inquiry that Congress will only accept certain types of days (I guess because it is easier to do it every year-- where one Senator sends a missive. The other Senators have 48 hours to question or deny the resolution missive, then if not contested- it automatically passes). There may be too many groups trying to have National Days. I did write the President. I talked with several people in the WH. I received a reply letter from the Director of NIH, congratulating me for my efforts. My Representative, JoAnne Davis, did address the House on My behalf in regards to Cushing's. I believe that my letters and news paper articles are posted on the boards. We will have to be thankful and grateful for the Resolution by Senator Inhofe. Remind every one to send his office thank you's. Knowing that we do have a NCAD in 2008, take it upon yourself to pass the word. Write a letter to the editor of several papers and TV shows. Pay for an ad in a National paper or magazine. Open up the phone book and mail a flier to everyone in the physicians section. Make your own exhibit, present it to people. Make and post a flyer at the hospitals. Make you own ways to raise money, bakesales, yard sales, special collection at church/school, from your doctors & nurses... Jayne Cushing's Awareness Advocate It is easy for you to come up with ways to spread the word.
  10. Yeah I'm glad you started this for the new year. I was waiting for the holidays to settle down. Of course, I'll be supporting the day and writing letters and emails and making phone calls. I hope to find us a celebrity ribbon wearer. Something else I am working on is national TV recognition with the major networks and National publications. You can email them as well on their "contact us" info. Contact the hosts of the show and the producers to mention April 8th and Cushing's Awareness. I am going to find out information on getting money (grant) to publish magazine adds/articles for the April editions, if not this year then for next year. I know they are probably being printed, but I just thought of this idea. My local paper will run a small 2x3 ad for starting at $300. I want the whole page! I thought about having a yard sale to raise money to put in an ad, but doubt that I'd make enough. Oh Well! Something else I thought about is getting a chain pharmacy to post cushings info for that week prior to the 8th. Medical school journal/papers can also be contacted. I know I must have emails over 100 doctors last year on the 7th (once I know that it had passed). I'll be setting up a booth at the women's Forum again this year. I hope to set up at some health expo's and at the local Hospital or at least make/pass out flyers. I'll get started now. Jayne
  11. Lynne, Speaking of next year... I asked Mary to ask the CUSH conference attendees what they want to do about next year. I made several suggestions, like east coast in 2007 and west coast in 2008. I'll let folks stay with me Maybe we can tour Washington DC and have a Senator or Representative speak at a CUSH conference. I am hoping to get a NCSAD voted on in Congress for every year (perpetual). This will be a big letter writing campaign- to include doctors and everyone we know. I hope Sue is smiling for us in Heaven right now! Jayne
  12. 109th CONGRESS2d SessionS. RES. 423Designating April 8, 2006, as `National Cushing's Syndrome Awareness Day'. IN THE SENATE OF THE UNITED STATESApril 4, 2006Mr. INHOFE (for himself and Mr. COBURN) submitted the following resolution; which was considered and agreed to --------------------------------------------------------------------------------RESOLUTIONDesignating April 8, 2006, as `National Cushing's Syndrome Awareness Day'. Whereas Cushing's Syndrome annually affects an estimated 10 to 15 people per million, most of whom are currently between the ages of 20 and 50; Whereas Cushing's Syndrome is an endocrine or hormonal disorder caused by prolonged exposure of the body's tissue to high levels of the hormone cortisol; Whereas exposure to cortisol can occur by overproduction in the body or by taking glucocorticoid hormones, which are routinely prescribed for asthma, rheumatoid arthritis, lupus, or as an immunosuppressant following transplantation; Whereas the syndrome may also result from pituitary adenomas, ectopic ACTH syndrome, adrenal tumors, and Familial Cushing's Syndrome; Whereas Cushing's Syndrome can cause abnormal weight gain, skin changes, and fatigue and ultimately lead to diabetes, high blood pressure, depression, osteoporosis, and death; Whereas Cushing's Syndrome is diagnosed through a series of tests, often requiring x-ray examinations of adrenal or pituitary glands to locate tumors; Whereas many people who suffer from Cushing's Syndrome are misdiagnosed or go undiagnosed for years because many of the symptoms are mirrored in milder diseases, thereby delaying important treatment options; Whereas treatments for Cushing's Syndrome include surgery, radiation, chemotherapy, cortisol-inhibiting drugs, and reducing the dosage of glucocorticoid hormones; Whereas Cushing's Syndrome was discovered by Dr. Harvey Williams Cushing, who was born on April 8, 1869; Whereas the Dr. Harvey Cushing stamp was part of the United States Postal Service's `Great American' series, initiated in 1980 to recognize individuals for making significant contributions to the heritage and culture of the United States; Whereas President Ronald Reagan spoke on April 8, 1987, in the Rose Garden at a White House ceremony to unveil the commemorative stamp honoring Dr. Harvey Cushing; Whereas following the ceremony, President Reagan hosted a reception in the State Dining Room for Mrs. John Hay Whitney, Dr. Cushing's daughter, and representatives of the American Association of Neurological Surgeons; and Whereas the Senate is an institution that can raise awareness in the general public and the medical community of Cushing's Syndrome: Now, therefore, be it Resolved, That the Senate--(1) designates April 8, 2006, as `National Cushing's Syndrome Awareness Day';(2) recognizes that all Americans should become more informed and aware of Cushing's Syndrome;(3) calls upon the people of the United States to observe the date with appropriate ceremonies and activities; and(4) directs the Secretary of the Senate to transmit a copy of this resolution to the Cushing's Understanding, Support & Help Organization.
  13. Cherri, If you click on "Track this topic" at the top of the thread, you will get an email when anyone posts here. I will post here when I hear from the White House, too. Jayne
  14. Cherri, Hopefully you will be able to tell them that it is a "NATIONAL Cushing's Awareness Day" Be sure to post the article if they do one! Thanks for spreading the word! Jayne
  15. Cherri, A group of cushies had a discussion on this board and picked the Birthdate of Dr. Harvey Cushing as the day wanted for Cushing's Awareness Day. CUSH organization adopted this day to celebrate awareness as well. Some of the other groups afilliated with Cushing's in anyway also agreed to publish this date also for their readers and members as {Good information sources for Cushing’s awareness:http://www.Cushings-help.com; http://www.CUSH.org; www.pituitary.org; www.Cushings-Help.net; www.pituitarydisorder.net} I as of this date have not sent them the necessary info, yet. I have written to the President of the United States, George W. Bush, to make a Presidential Proclamation to establish a "National Cushing's Awareness Day" for April 8. I will find out by phone and mail and let everyone know if it is done. To answer your question CUSH Organization has established April 8 as Cushing's Awareness Day. Aside from that-- I contacted my paper to do a story and they don't do Awareness days for any groups, just S.O.P. Jayne
  16. OKC is about a 20 hour drive for me, so I don't think I'll be popping by. Sorry. It sounds like fun. I'll be there in spirit. Don't get too sunburned. Jayne
  17. Yeah! Joanie! This is great news. Hopefully they will respond and you can post that and your letter. Who knows, maybe you will become famous someday and can promote cushing's awareness. Thanks for helping to spread the word. Jayne
  18. I saw the article in the newspaper (at the end of this) and wrote to the doctor. This is a simple example of the things you can do to promote awareness when ever you get the chance. Like letter writing and emailing doctors! MY EMAIL:Dr Lewis, I enjoyed reading your article "Ovarian syndrome treatable" because it is informative and well written for a general audience. I am surviving Cushing's Disease and am now an advocate for Cushing's Awareness. I want to remind you about Cushing's Syndrome as it is misdiagnosed as PCOS and if left untreated--fatal. In my experiences our medical community dismisses a diagnosis of Cushing's because "it is rare". I don't think this is the case. About 20% of adults have a pituitary tumors (functioning and non-functioning). You did state "The work up of women with suspected PCOS includes lab tests to rule out tumors, adrenal gland and pituitary problems" in the article. I hope that in future references you will use the name of this life threatening malady--Cushing's. If more people recognize it by name more lives may be saved. Please support a Cushing's Awareness Day on April 8, 2005 (Dr Harvey Cushing's birthday), by acknowledging this disease to your colleagues. HER RESPONSE: Dear Ms. Kerns: Thank you for your letter and for reading my column. You are correct in stating that Cushings syndrome can mimic PCOS and is so rare as to be overlooked at times. Cushings syndrome is on the list of possible causes for women with PCOS, and when warranted I do tests to rule this out. I haven't uncovered a case yet, but I continue to suspect it when faced with these patients. It's encouraging to hear from people dedicated to increasing awareness of devastating medical conditions, especially the relatively rare ones that can get lost in the shuffle. Thank you again for your letter, and I will continue to consider Cushings as a possibility in these patients as well as encourage my colleagues to do so as well. Arlene D. Lewis, M.D. Gynecology & Gynecologic Surgery THE ARTICLE: PCOS Source: http://www.fredericksburg.com/News/FLS/200...2202005/1670562 Polycystic ovarian syndrome is a treatable condition Date published: 2/20/2005 DO YOU sometimes go months at a time without having a period only to fear that you're bleeding to death once it finally starts? Are you doing all the right things to lose weight, but the weight just won't come off--in fact, you're gaining weight? Have you noticed hair growth in places where women just aren't supposed to have hair? Have you had trouble getting pregnant? If you answered yes to any of these questions, you may have polycystic ovarian syndrome. PCOS is a common condition affecting approximately 5 percent of all pre-menopausal women. Although the exact cause of PCOS is not fully understood, insulin resistance and over-secretion of androgens (male hormones) are important factors. When we eat carbohydrates, our pancreas secretes a substance called insulin, which allows our cells to use the glucose in our food. Some people's cells are resistant to insulin, so the glucose isn't absorbed as well. The pancreas responds by secreting more insulin, and blood levels of this important hormone rise. Among other things, this overabundance of insulin affects the ovaries, causing them to secrete excessive amounts of androgens--which leads to abnormal hair growth and anovulation (the failure of the ovaries to release an egg on a regular schedule). That then leads to irregular periods and infertility. PCOS can be diagnosed by symptoms alone, but sometimes laboratory studies are necessary to make or confirm the diagnosis, and to rule out conditions that can have similar symptoms. For an overweight woman with infrequent periods and hair on her chest, there's a good chance that PCOS is the problem. However, the diagnosis is a bit trickier in a woman of normal weight with no abnormal hair growth. The work-up of women with suspected PCOS includes lab tests to rule out tumors, adrenal gland and pituitary problems. It's also important to commence routine screening for associated conditions such as high blood pressure, diabetes and elevated cholesterol. A pelvic ultrasound also may be helpful. Once the diagnosis is made, one of the best and longest-lasting treatments in those who are overweight is weight loss. This can be difficult because insulin promotes weight gain, but it's not impossible. Lower-carbohydrate diets are often more effective than lower-fat diets. Also, simple sugars should be avoided; instead, opt for complex carbohydrates such as whole grains. Among the medications that are helpful in alleviating the symptoms and physical signs of PCOS are: the birth control pill/patch/ring; drugs commonly used for diabetes such as metformin; and a host of medications aimed at reducing abnormal hair growth. For those women trying to get pregnant, medications to induce ovulation are available. Women with PCOS are at higher risk for endometrial cancer (cancer of the lining of the uterus) so it's important for them to have periods, which can be induced using birth control. The higher cancer risk stems from anovulation, which leads to a secretion of estrogen without a counteracting secretion of progesterone. This is called unopposed estrogen. It stimulates the endometrium, which is the lining of the uterus, and the part that partially sloughs off during a period. If there is no progesterone around to counteract the estrogen, then the endometrium is under continual stimulation, and this can lead to endometrial cancer. The missed periods, infertility, hair growth and weight gain of PCOS can be very unnerving. If you happen to recognize yourself in this description, don't fret--you're not turning into a hairy, overweight man. It's infinitely more likely that you have PCOS, and effective treatments are available. DR. ARLENE LEWIS welcomes reader comments and questions. She can be reached by writing at Free Lance-Star, 616 Amelia St., Fredericksburg, Va., 22401 or by e-mail at newsroom@freelancestar.com. Date published: 2/20/2005
  19. That's awesome Cheryl. Keep 'Spreading the word' to everyone. The White House says it takes 6 weeks notice to petition if it can happen. Where is Lunch? Jayne
  20. I think that this is a great idea, Sharon. I was thinking of having several typs of letters to choose from or even having a thread where everyone can post a letter they sent if it is different than the sample. That way people could get lots of ideas to use. Looking foward to our chat, Sue! Jayne
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