PCOS the SILENT EPIDEMIC Polycystic Ovary Syndrome (PCOS) Is a Serious Genetic, Hormone, Metabolic and Reproductive Disorder That Affects Women

Total Page：16

File Type：pdf, Size：1020Kb

PCOS THE SILENT EPIDEMIC Polycystic Ovary Syndrome (PCOS) is a serious genetic, hormone, metabolic and reproductive disorder that affects women. PCOS can lead to lifelong complications; infertility; anxiety, depression and other psychosocial disorders; obesity; severe hair and skin issues; endometrial cancer; type 2 diabetes; cardiovascular disease; nonalcoholic fatty liver disease and other life-threatening conditions. WE NEED YOUR SUPPORT FOR THE BIPARTISAN PCOS AWARENESS MONTH RESOLUTION AND BICAMERAL CONGRESSIONAL PCOS CAUCUS PCOS AFFECTS of 10-15%of % 50women with PCOS become WOMEN PCOS IS THE LEADING CAUSE OF diabetic Before INFERTILITY Age 40 IN WOMEN WOMEN WITH PCOS ARE economic Burden $ 50% of 4.3 Billion WOMEN WITH Estimated annual cost to the 2X PCOS ARE GOING American healthcare system to diagnose and MORE LIKELY TO BE UNDIAGNOSED OR treat women with PCOS HOSPITALIZED MISDIAGNOSED PCOS in pregnancy is WOMEN WITH PCOS ARE associated with increased risk of gestational diabetes, preeclampsia, pregnancy-induced MORE3 LIKELYX TO DEVELOP hypertension, preterm delivery, cesarean ENDOMETRIAL Limited PCOS awareness is delivery, miscarriage, and CANCER hurting military familes, fetal and infant death. servicewomen and verterans. FOR RESEARCH SOURCES pcoschallenge.org/sources COSPONSOR PCOS RESOLUTION H.RES.864 • A Resolution to designate September 2018 as PCOS Awareness Month passed the U.S. Senate in December 2017 (S.Res.336). The same Resolution has been introduced in the U.S. House of Representatives (H.Res.864) by VIEW VIDEO - bit.ly/pcos-video Congressman David Scott (GA-13). The Resolution was introduced with 37 original cosponsors. JOIN THE BICAMERAL CONGRESSIONAL PCOS CAUCUS • Thank you to the U.S. Senate for passing S.Res.336. Members of the U.S. House • The Caucus will serve as a bipartisan of Representatives, please cosponsor educational forum for legislators and H.Res.864. their staff to work with the patient • By passing this Resolution, Members community, researchers, healthcare will ensure PCOS has its own health experts and Congressional colleagues observance, and they will help spread to understand and address challenges awareness about PCOS, which affects women with PCOS are facing. up to 15% of women in the U.S. and is a leading cause of infertility and type 2 • Caucus members will promote bipartisan diabetes. legislative and policy solutions that help drive optimal health outcomes for • PCOS is a life-long health condition. women, girls and servicewomen with Raising awareness about the disorder PCOS; reduce the economic burden of will help with earlier diagnosis and the disorder; and address gaps in PCOS intervention, reduce patients’ health risks, research, education, treatment and care. encourage more research and improve access to care. To cosponsor H.Res.864 and/or to join the Bicameral Congressional PCOS Caucus, please contact [email protected] in Rep. David Scott’s Office. FOR MORE INFORMATION ON PCOS Contact Sasha Ottey, Executive Director PCOS Challenge: The National Polycystic Ovary Syndrome Association [email protected] or (404) 855-7244 .

Copy Link

Recommended publications

Giving Voice to a Silent Disorder: a Policy Proposal to Address Polycystic Ovary Syndrome
GIVING VOICE TO A SILENT DISORDER: A POLICY PROPOSAL TO ADDRESS POLYCYSTIC OVARY SYNDROME by Erica Nash-Thomas A capstone project submitted to Johns Hopkins University in conformity with the requirements for the degree of Master of Arts in Public Management Baltimore, Maryland December 2020 © 2020 Erica Nash-Thomas All Rights Reserved ABSTRACT On July 8, 2020, the U.S. Supreme Court upheld a Trump Administration rule limiting the birth control benefit, including oral contraceptives, under the Affordable Care Act, which would permit employers to refuse coverage in their employee health plans on “moral or religious” grounds. The ruling threatens access to this medicine to the millions of women and girls living with Polycystic Ovary Syndrome (PCOS), a hormonal, metabolic and reproductive disorder. PCOS affects between about five to 10 million women and girls in the United States, and more than 50 percent of women living with PCOS are either unaware they have the disorder or are improperly diagnosed. The exact cause of this incurable disorder remains unknown. This Capstone explores the history of PCOS, its classifications over the years and the ways that activists and advocates have organized to raise awareness about the disorder. The paper will present the soundness of pursuing a legislative remedy that would give voice to a silent disorder affecting the health outcomes of millions of women (and African American women more severely), with an estimated total annual cost of at least $4 billion in the United States. The Capstone also provides an examination of a legislative proposal that would protect the medicines women and girls need while expanding research, encouraging the development and training of more PCOS researchers and promoting public education about the disorder.
[Show full text]
International Evidence-Based Guideline for the Assessment
International evidence-based guideline for the assessment and management of polycystic ovary syndrome 2018 Publication approval Publication history Original version 2011 – (National PCOS guideline) Updated version August 2015 – Aromatase inhibitors section update The guideline recommendations on pages 16 to 34 of this document were approved by the Chief Executive Officer of the National Health and Medical Updated, expanded and international Research Council (NHMRC) on 2 July 2018 under section 14A of the National current version February 2018 Health and Medical Research Council Act 1992. In approving the guideline recommendations, NHMRC considers that they meet the NHMRC standard for clinical practice guidelines. This approval is valid for a period of five years. Authorship NHMRC is satisfied that the guideline recommendations are systematically This guideline was authored by Helena Teede, derived, based on the identification and synthesis of the best available Marie Misso, Michael Costello, Anuja Dokras, scientific evidence, and developed for health professionals practising Joop Laven, Lisa Moran, Terhi Piltonen and in an Australian health care setting. Robert Norman on behalf of the International This publication reflects the views of the authors and not necessarily PCOS Network in collaboration with funding, the views of the Australian Government. partner and collaborating organisations, see Acknowledgments. Disclaimer Copyright information The Centre for Research Excellence in Polycystic Ovary Syndrome © Monash University on behalf of the NHMRC, (CREPCOS) research in partnership with the European Society of Centre for Research Excellence in PCOS and Human Reproduction and Embryology (ESHRE) and American Society the Australian PCOS Alliance 2018. of Reproductive Medicine (ASRM), and in collaboration with professional Paper-based publication: This work is societies and consumer advocacy groups internationally, developed the copyright.
[Show full text]
Pcoschallenge.Com Want to Know More About for More Tips, Articles, Discussions and Support for PCOS and Nutrition? Women with Polycystic Ovarian Syndrome (PCOS)
MAY 2014 | VOLUME 1 |ISSUE 5 PCOSChallengeE-ZINE STROKE in Women with PCOS NATIONAL PHYSICAL SPORTS Are you at risk? FITNESS & MONTH Protect Yourself & Your Baby: Preeclampsia Awareness Girls & Teens The link between Obesity, PCOS and How to Never, Diabetes Ever, EVER MIss a workout America Supports Anti-Discrimination Laws for Obesity CONTENTS MAY 2014 FEATURES 1 Letter from the Executive Director 2 How to Never, Ever, Ever, Miss Another Workout By Josef Brandenburg Mother’s Day Sucks 6 By Sonya Satveit 7 Research 2 American Public Support for Anti-Discriminatory Laws for 6 Obesity 8 Stroke in Women 11 PCOS Challenge Radio Show 7 Upcoming Guests 12 Preeclampsia Awareness 15 PCOS Research 12 The Link Between Obesity, PCOS and Diabetes in 5 15 Adolescent Females 16 Lupus Awareness Featured Recipe 17 Low-Glycemic Lentil Soup 16 By Dr. Louise Chang PCOS CHALLENGE E-ZINE - MAY 2014 VOLUME 1 ISSUE 5 letter from the executive Director We each have our challenges that we are presented with in life. Most of us who read this E-Zine are faced with health challenges, one being Polycystic Ovarian Syndrome, that can often be difficult to cope with and can have a severe impact on quality of life. Over the past few years, I have been adjusting to a way of life that includes coping with an additional health challenge--Systemic Lupus Erythematosus. After multi- ple bouts of debilitating chest pain, joint pain and dif- ficulty breathing and visits to the Emergency depart- ment, I finally requested that a battery of tests be done to rule out autoimmune diseases.
[Show full text]
H.Res.495, the Resolution Designating September As PCOS Awareness Month and Recognizing the Seriousness of the Disorder
931 Monroe Drive Suite A-470 Atlanta, GA 30308 Phone: (404) 855-7244 Fax: (301) 224-9902 www.pcoschallenge.org November 22, 2017 The Honorable Michael C. Burgess, M.D. The Honorable Gene Green Chairman Ranking Member House Energy and Commerce House Energy and Commerce Subcommittee on Health Subcommittee on Health 2336 Rayburn House Office Building 2470 Rayburn House Office Building Washington, DC 20515 Washington, DC 20515 Subject: Resolution Recognizing the Seriousness of Polycystic Ovary Syndrome Dear Chairman Burgess and Ranking Member Green, On behalf of the undersigned organizations committed to the health and improved quality of life for women and girls with polycystic ovary syndrome (PCOS), we are writing to bring to your attention, and ask for your support of H.Res.495, the resolution designating September as PCOS Awareness Month and recognizing the seriousness of the disorder. This resolution will help to bring critical nationwide attention to PCOS, one of the most common human disorders and the most common endocrine (hormone) disorder in women. PCOS is a genetic, reproductive, hormonal and metabolic disorder that affects an estimated five to 10 million women and girls in the U.S. and more than 10 percent worldwide. PCOS has become one of the most pervasive and underserved public health issues that threatens the mental and physical health, and quality of life of girls, women and their families. The disorder can lead to obesity and the most common causes of death in women including type 2 diabetes, cardiovascular disease and cancer. One of the most heartbreaking challenges of PCOS is its effect on fertility and family building.
[Show full text]
Nutrition for PCOS Q&A with ANGELA NEW GRASSI FOOD LABELS? PCOS Nutrition Center Founder
MARCH 2014 | VOLUME 1 |ISSUE 3 E-ZINE PCOSChallenge MARCH NATIONAL NUTRITION MONTH Dirty12 Endocrine Disruptors Nutrition FOR PCOS Q&A WITH ANGELA NEW GRASSI FOOD LABELS? PCOS Nutrition Center Founder Endometriosis Awareness: Are You at Risk? CONTENT MARCH 2014 FEATURES 1 Letter from the Executive Director 2 Events for March 3 Endometriosis Awareness 5 Call for Volunteers 6 PCOS Nutrition 3 Angela Grassi, MS, RDN, LDN 8 Dirty Dozen List of Endocrine Disruptors 11 PCOS Challenge Radio Show 6 Upcoming Guests 12 PCOS Diet and Lifestyle Management 8 Hilary Wright, MEd, RD, LDN 15 Healing Your Body Naturally Ovarian Cysts Solutions Carrie Louise Daenell, ND 17 PCOS, It’s Not Just About Women 12 Fertility Specialist Mark Perloe, MD 19 FDA Proposed New Food Labels Featured Recipe 20 Spicy Black Bean Cakes 15 17 PCOS CHALLENGE E-ZINE - MARCH 2014 VOLUME 1 ISSUE 3 letter from the executive Director The month of March is filled with observances and celebrations that are relevant to us as women with PCOS. International Women’s Day, National Nutrition Month and Endometriosis Awareness Month are all observed this month. They are reminders to nurture our health and to celebrate ourselves as women. Regardless of how polycystic ovarian syndrome has affected you, whether it is hirsutism, hair loss, weight gain, infertility or subfertility, or in other ways, always remember that as women, we have innate strength and resilience that can keep us persevering when we feel knocked down. Women deal with a lot of pain and burden, but can also be fierce fighters. Take a moment to celebrate yourself as a woman, and whether it is yet to be fully realized, your importance and significance in your own life’s story and for those with whom you choose to share your greatness.
[Show full text]
Michael Pollock: Good Afternoon, Everyone. Welcome to the First Ever Patient-Focused Medical Product Development Meeting to Explore Depression
Michael Pollock: Good afternoon, everyone. Welcome to the first ever patient-focused medical product development meeting to explore depression. My name is Michael Pollock. I’m the chief executive officer for the Depression and Bipolar Support Alliance, also known as DBSA. On behalf of the board of directors and the staff who have joined us here today, we are grateful to all the peers and their supporters who have traveled to Silver Spring to share their perspectives and to those who are participating virtually through our live webcasts. DBSA has a vision to transform the definition of wellness throughout the entire healthcare ecosystem, to achieve treatment outcomes that reflect what’s important to people who live with mood disorders. Today’s meeting is a major step towards realizing that goal. We are grateful to FDA staff, medical product developers, and researchers who are in attendance. Over the next four hours through polling and guided discussion, peers and their supporters will be sharing the impact depression has had on their life and the demands it can place on their whole health, as well as identifying current treatment options that are making a difference and sharing their personal outcome goals. It is our hope that by better understanding the impacts, burden on whole health, identified treatment options that are working, and treatment outcomes sought by peers, we will highlight the need for continued innovation in research and development among the industry and with regulators. Before we begin, I want to take a moment to thank our partners and our sponsors who made today’s meeting possible, and they are listed here on the screen.
[Show full text]
Vital-Signs-Summer-2015.Pdf
Vital Signs SUMMER 2015 | VOLUME 67 FEATURE STORIES Breast Cancer Page 4 Liver Damage Page 6 Q&A: New Leadership Page 8 Community Calendar Page 12 Shortage of Organs for Transplantation Requires that More Donors Step Forward Organ donation has been described as one of medicine’s greatest modern miracles — in many cases resulting in a long and healthy life for individuals who were near death. Each day in the United States, an average of 79 people receive life-saving transplants, according to federal statistics, but 21 others die while waiting for transplants that can’t take place because of the shortage of donated organs. Continued on page 7 Vital Signs SUMMER 2015 | VOLUME 67 UCLA Baby App The new UCLA Baby app lets a woman keep track of everything during her pregnancy, from counting kicks to tracking weight and timing contractions. After entering the baby’s due date, the app will In This Issue provide tips, weekly milestones, to-do checklists and introductions to the UCLA care team, as well What’s New at UCLA as recommend tests and guides to classes, online 2 support groups and breastfeeding information. In Your Community The app is available for both the iPhone and Android. 3 UCLA offers services and support near you. For more information, go to: Breast Cancer uclahealth.org/babyapp 4 New therapies improve outlook for women with advanced breast cancer. Liver Damage 6 Overuse of some nonprescription pain relievers and nutritional supplements Online Access 24/7 causes potential harm to liver. With myUCLAhealth, UCLA Health’s 7 Organ Transplant online patient portal, patients can request For organ transplantation to truly be appointments, view their medical history and successful, potential donors need to most test results, request prescription refills indicate their willingness to give.
[Show full text]
PCOS Advocacy “I WOULD RATHER BE ALIVE with PCOS THAN DEAD WITHOUT IT” PCOS Adoption Story
PCOSJAN - MAR 2018 | VOLUME 3 | ISSUEChallenge 1 WHAT NO ONE TELLS YOU ABOUT INFERTILITY HISTORIC YEAR FOR PCOS Advocacy “I WOULD RATHER BE ALIVE WITH PCOS THAN DEAD WITHOUT IT” PCOS Adoption Story HOW TO TALK TO YOUR PARTNER ABOUT PCOS CHALLENGE JAN - MAR 2018 VOLUME 3 ISSUE 1 1 PCOS-RELATED MENTAL HEALTH ISSUES CONTENTS 3 Letter from the Executive Director 4 8 I Would Rather Be Alive with PCOS 4 Than Dead without It By Audrey Holsclaw How to Talk to Your Significant Other About 8 PCOS-Related Mental Health Issues By Gretchen Kubacky, PsyD 12 18 Multiple Disorders in One Body 12 By Felice Gersh, MD Heart Disease and PCOS 18 By Catherine Koutroumpis, RN, CWOCN PCOS and Breastfeeding Featuring 22 Lisa Marasco, MA, IBLCC By Renetta DuBose 22 26 25 PCOS Diva/PCOS Challenge Confidence Grant Historic Year for PCOS Advocacy: 26 U.S. Senate Passes PCOS Resolution Understanding the Scope of PCOS from the 30 Patient Support Nonprofit Perspective By Sasha Ottey, MHA, MT (ASCP) 34 PCOS Challenge 2017 Highlights 48 Thank You to Our 2017 Supporters 34 The Things No One Tells You About Infertility 58 58 By Jennifer "Jay" Palumbo My PCOS Adoption Story 60 By Dina Stonberg 60 Remembering a Pioneer: 64 PCOS Dietitian Monika Woolsey By Gretchen Kubacky, PsyD 64 An Integrative Approach to Wellness and 66 Fertility in Women with PCOS By Maureen Kelly, MD 70 Mark Perloe, MD Receives Ricardo Azziz/ 70 PCOS Challenge Advocacy Leadership Award 71 The Three Worst Diets for PCOS 71 Featuring Julie Duffy Dillon, MS, RD, NCC, LDN, CEDRD EDITORIAL CREDITS LETTER FROM THE EXECUTIVE DIRECTOR Editor-in-Chief n 2017, PCOS Challenge: Sasha Ottey, MHA The National Polycystic I Ovary Syndrome Associ- Graphic Design ation worked with our ad- Olena Lykova; William R.
[Show full text]
Polycystic Ovary/Ovarian Syndrome (PCOS) Underrecognized, Underdiagnosed, and Understudied
Polycystic Ovary/Ovarian Syndrome (PCOS) Underrecognized, Underdiagnosed, and Understudied 2019 www.nih.gov/women Acknowledgments This informational booklet was developed as part of Lt. Col. Dr. Kim Hopkins’ postdoctoral training with Dr. Samia Noursi at ORWH. Many thanks to special volunteers Nathan Dinh (University of Richmond) and Bani Saluja (University of Maryland), who played a major role in compiling the information in this booklet. Table of Contents Section I: What is PCOS? ........................................................... 1 Section II: Defining PCOS through the years ............................. 2 Section III: Signs of PCOS ........................................................... 3 Section IV: Risk factors and preventive measures .....................6 Section V: Further information for health care providers and researchers .................................................... 8 Section VI: Economic impact ..................................................... 9 Section VII: How NIH is addressing PCOS ............................... 10 Section VIII: Conclusion .......................................................... 11 Section IX: Definitions ............................................................ 12 References .............................................................................. 13 ii Polycystic Ovary/Ovarian Syndrome: Underrecognized, Underdiagnosed, and Understudied Section I: What is PCOS? Polycystic ovary/ovarian syndrome (PCOS) is a set of symptoms related to an imbalance of hormones that can
[Show full text]
How PCOS Challenge Is Changing the Future for Women and Girls with PCOS PCOS AWARENESS SYMPOSIUM 2017
How PCOS Challenge is Changing the Future for Women and Girls with PCOS PCOS AWARENESS SYMPOSIUM 2017 1 MY STORY • Diagnosed in 2008 • Diagnosis was a defining moment • Very limited support resources available • Started PCOS Challenge in 2008 • One person can make a difference 2 WHO IS PCOS CHALLENGE? • The National Polycystic Ovary Syndrome Association • Registered 501(c)(3) public charity • Largest nonprofit support organization for women and girls with PCOS gloBally • Provide help for PCOS patients through television, radio and print evidence-Based content, support groups, grants, health screenings, research, and education, awareness and advocacy initiatives • Serve nearly 45,000 members • Despite size, we have very limited infrastructure and need your help to sustain and grow 3 WHO IS PCOS CHALLENGE? (Cont.) • Patient Advisory Board • Health Advisory Board • Medical and Scientific Advisory Board 4 Mission & Vision • MISSION: Raise public awareness about PCOS and help women and girls with the condition overcome their symptoms and reduce their risks for life-threatening related diseases such as diabetes, cardiovascular disease and cancer. • VISION: PCOS is treated as a public health priority. 5 PCOS ADVOCACY 6 Polycystic Ovary Syndrome: The Metabolic Disorder Wreaking Havoc on Public Health Journal of Clinical Endocrinology and Metabolism, January 2015 – Looked at hospital admissions of women with PCOS in Western Australia 2,500 vs age matched women without PCOS (25,000) 2x - nonobstetric and non-injury-related 2x - anxiety hospital
[Show full text]
8/7/2015 1 Nutrition Management for PCOS Disclosure to Participants
8/7/2015 Angela Grassi MS, RDN, LDN Owner, PCOS Nutrition Center Nutrition Management For PCOS Author PCOS: The Dietitian’s Guide, The PCOS Workbook, The PCOS Nutrition Center Cookbook www.PCOSnutrition.com Bryn Mawr, PA @PCOSnutrition Disclosure to Participants • Retailer of Nordic Naturals fish oil • Retailer of Ovasitol by Theralogix What Is The Best Eating Plan For PCOS? • I have not received anything else of value from a commercial party related directly or indirectly to the subject of this presentation. \ Unique Challenges For Women With Medical Nutrition Therapy (MNT) PCOS Long-Term Goals: • Yo-yo dieters • Intense cravings • Reduce body weight if overweight • Impaired levels of ghrelin & leptin • Maintain weight loss after weight reduction • Increased hunger? • Engage in 30 minutes or more of moderate intensity activity most if not all days of the • Hypoglycemia common week • Higher prevalence of eating disorders • Increased anxiety, depression, bipolar 1 8/7/2015 Dietary Composition In The Treatment MNT Long-Term Goals (Continued): Of PCOS: Systematic-Review • Obtain knowledge and skills to support • Inclusion criteria: not taking anti-obesity behavior changes medications • Resolve metabolic syndrome • 6 Studies, 137 women • Reduce risk factors for T2D and CVD • Results: “Subtle differences between diets” • Improve infertility • Weight loss improved PCOS regardless of Grassi A. Polycystic ovary syndrome. In, The Academy of Nutrition and Dietetic's Nutrition Care Manual . Chicago, IL. Publication date: October 2012. dietary composition. Potential Eating Plans Effects Of Increased • Diet and lifestyle primary treatment Protein-to-Carbohydrate Ratios approaches • Controlled, 6 mo. trial, 27 PCOS women • Eating plans need to be individualized • High Protein (HP) (>40% protein,30% fat) • Eating plans that have shown favorable vs.
[Show full text]
Sherif-Atl-2017
PCOS Challenge Atlanta September 16th, 2017 Polycystic Ovary Syndrome: Cardiovascular Disease risk Katherine Sherif, MD Professor & Vice Chair, Department of Medicine Director, Jefferson Women’s Primary Care Thomas Jefferson University Case 1 Multiple Missed Opportunities Case 1 46 year old woman with diabetes - History • 46 year old woman moved to Philadelphia - needs a primary care • Type 2 diabetes diagnosed 4 years ago • Hypertension • High cholesterol • Overweight • Difficulty conceiving, 1 pregnancy delivered via C-section • 3 miscarriages, gestational diabetes • Gall bladder surgery • Mother had heart attack aged 53 Case 1 46 year old woman with diabetes - Medications • Type 2 diabetes (used to take metformin TID) • Glipizide 10mg twice a day • Hypertension • Lisinopril 40mg • HCTZ 25mg • High cholesterol • Atorvastatin 40mg • VMS - none Case 1 46 year old woman with diabetes • Vital Signs • Blood pressure 154/86 • Height 5’4” Weight 207# BMI 35 • Physical Examination • Moderate alopecia • Severe facial hirsutism • No acne • Normal lungs, heart, abdomen • Multiple skin tags on neck • Acanthosis nigricans on neck, axillae, knuckles, elbows, knees Case 1 46 year old woman with diabetes - studies • Labs • Blood chemistry serum creatinine 1.1 • Liver functions AST/ALT 44/62 • Hemoglobin A1c 8.1 • Blood count WBC 11.1 Hemoglobin 10.5 • Triglycerides 350 LDL 223 HDL 36 • Urine protein 45 • Additional labs • Vitamin B-12 283 • Liver ultrasound • Fatty infiltration of the liver Case 1 46 year old woman with diabetes - Problem List • Type 2 Diabetes: uncontrolled • Uncontrolled Lipids: uncontrolled • Decreased kidney function (serum creatinine and urine protein) • Stage 2 Chronic Kidney Disease with GFR 60 • CKD G2/A2 • Non-alcoholic fatty liver disease (NAFLD) • Anemia secondary to CKD • Vitamin B-12 deficiency • 10-year risk of MI: 7%.
[Show full text]