🔵 New on the Message Boards ~ July 22, 2017

 

A quick summary of some of this week’s activity on the Cushing’s Help message boards.

A new member posted Another Hump Pic

More discussion about post-op cortisol and weaning in Nicole, Undiagnosed Bio

Save the Date info for a Conference on Adrenal Insufficiency

Form over fashion may save your life! Yes, You Need a Medical Alert Bracelet!

Our newest Newbie has been cleared for surgery in August!

A new member wonders about A Small Hump Maybe?

The Boards Have Been Upgraded Again.  There are 3 skin choices at the bottom, including the default, if you want to try another look.

You can post directly to Facebook and/or Twitter, if you choose.  People who are not logged into the boards will not be able to see what you post on them.

This new upgrade brought us some icons in the bottom right of each post where you can “rate” the information – but only in a positive way.   They slide out from the little heart-looking image and are fairly self-explanatory.

Screenshot 2017-07-20 00.05.11.png

 

I just added a new icon to the list.  Although it’s small, it’s to welcome new members.

 

There’s other stuff happening but you’ll just have to read the boards to find out what!

(Please note that I’m sharing these from the Cushings-Help.com message boards. You must be a logged-in member of that board to read them. Log in or register at http://cushings.invisionzone.com )

Please join us!

 

📅 Don’t forget! Webinar with Dr. Friedman, TODAY, July 16, 2017

Join Dr. Theodore Friedman for an informative webinar on the endocrine causes of hair loss in women. Dr. Friedman will discuss what hormones to measure if a woman is experiencing hair loss. He will discuss how to optimize hormone replacement to minimize or reverse hair loss. There will be plenty of time for questions and discussion.

Sunday, July 16, 2017 at 5:00 pm Pacific Daylight Time, 8:00 pm Eastern Daylight Time

Meeting number (access code): 808 128 401

Meeting password: hormones

join the meeting here.

Join by phone Audio connection:

+1-855-797-9485 US Toll free

+1-415-655-0002 US Toll

Global call-in numbers
Show toll-free dialing restrictions

Access code: 808 128 401

You can join on a website (that will allow you to hear the presentation and view the slides) or by telephone (that will allow you only to hear the presentation). There will be time for questions by “chat” and the video conference will be posted on goodhormonehealth.com a few days after.

You will be required to mute your phones/computers. Please contact us at mail@goodhormonehealth.com if you have questions.

Dr. Friedman has been our guest four times on BlogTalkRadio.  Listen to one of his past interviews here: http://www.blogtalkradio.com/cushingshelp/2012/04/03/dr-theodore-friedman-returns-for-his-fourth-interview

🔵 New on the Message Boards ~ July 15, 2017

 

A quick summary of some of this week’s activity on the Cushing’s Help message boards.

A new question about the cost vs benefits of growth hormone under the topic Growth Hormone

A newbie who is not yet diagnosed but has Bi lateral adrenal tumors

Information about Webinar: Coping With the Ups and Downs of Pituitary Disorders

A new Image GalleryA Dancer’s 40 lbs Weight Gain in under 2 years + symptoms

The first picture shows me in peak performance shape weighing about 105 lbs standing at 5’4″ contrasted with how I look now at about 147 lbs with swollen legs&arms, puffy red face, fat above the collar bone and on the neck, and lots of weight gain in the butt/thigh area. It really looks like I don’t have a neck anymore.

Following are photos of how my face has steadily changed every few months. Notice how I used to have a very defined heart-shaped face with a pointy chin, and now have a round face with jowls and numerous neck lines/rolls that extend past my collar bone.

The question was asked: Has anyone stayed in a hospital for multiple days of inpatient testing?

A new member from Nottingham, UK was told she had cyclical edema, then PCOS which all turned out to be Cushing’s.

 

There’s other stuff happening but you’ll just have to read the boards to find out what!

(Please note that I’m sharing these from the Cushings-Help.com message boards. You must be a logged-in member of that board to read them. Log in or register at http://cushings.invisionzone.com )

Please join us!

 

📅 Webinar: Coping With the Ups and Downs of Pituitary Disorders

Presented by

Linda M. Rio, M.A., MFT

After registering you will receive a confirmation email with details about joining the webinar.

Contact us at webinar@pituitary.org with any questions or suggestions.

DATE:  July 17, 2017
TIME:  10:00 AM – 11:00 AM Pacific Daylight Time/1:00 PM – 2:00 PM Eastern Daylight Time

 

Webinar Learning Objectives:

By attending this webinar participants will:

  1. Be able to identify at least 3 mental health symptoms that are common to those diagnosed with a pituitary disorder.
  2. Understand basics of “trauma” and its potential role in the etiology of some pituitary disorders.
  3. Know how the medical/physiological aspects of pituitary tumors and other pituitary disorders can interact and affect the mental health of patients.
  4. Recognize the potential impact on the family for those with a member with a pituitary disorder.
  5. Learn some positive coping skills for both pituitary patients and their family members.

Presenter Bio:

Linda has been a Marriage & Family Therapist (MFT) for over thirty years. She is also the editor/author of The Hormone Factor in Mental Health: Bridging the Mind-body Gap (2014), which includes contributions from some of the world’s top experts in endocrinology, medical family therapy, nutrition, patient advocacy as well as real accounts from patients and their family members. Linda was on the editorial team for Pituitary Disorders Diagnosis and Management (2013), and co-author with her daughter, Tara, of a book about eating disorders. She has authored dozens of articles for professionals as well as the general public on a variety of topics, appeared on radio and T.V. Linda and her husband, Lou, just celebrated their 48th anniversary. They have two children and 3 granddaughters who are now in college.

📅 Webinar with Dr. Friedman July 16, 2017

Join Dr. Theodore Friedman for an informative webinar on the endocrine causes of hair loss in women. Dr. Friedman will discuss what hormones to measure if a woman is experiencing hair loss. He will discuss how to optimize hormone replacement to minimize or reverse hair loss. There will be plenty of time for questions and discussion.

Sunday, July 16, 2017 at 5:00 pm Pacific Daylight Time, 8:00 pm Eastern Daylight Time

Meeting number (access code): 808 128 401

Meeting password: hormones

join the meeting here.

Join by phone Audio connection:

+1-855-797-9485 US Toll free

+1-415-655-0002 US Toll

Global call-in numbers
Show toll-free dialing restrictions

Access code: 808 128 401

You can join on a website (that will allow you to hear the presentation and view the slides) or by telephone (that will allow you only to hear the presentation). There will be time for questions by “chat” and the video conference will be posted on goodhormonehealth.com a few days after.

You will be required to mute your phones/computers. Please contact us at mail@goodhormonehealth.com if you have questions.

Dr. Friedman has been our guest four times on BlogTalkRadio.  Listen to one of his past interviews here: http://www.blogtalkradio.com/cushingshelp/2012/04/03/dr-theodore-friedman-returns-for-his-fourth-interview

Webinar: Make Sense of Your Dollars

Tuesday, June 13, 2017 at 10:00am PST.

A rare disease diagnosis is something that no one can plan or prepare for and it can often lead to financial burdens, but with the right guidance in financial planning, you can overcome these budgeting obstacles. Listen in to hear professionals in finance guide you through money management and budget preparation.

If you are unable to attend the live webinar, still register so you can receive a link to the recorded content.

Don’t forget, to access this webinar use the password: “Rare” with a capital “R”.

Panelists:
 Lori Leathers, Advisor, 1847 Financial

As an advisor with 1847Financial, Lori supports the goals of individuals and families through life insurance, fixed annuities, disability, and long-­‐term care insurance. Before working in this industry, Lori as a pharmaceutical sales representative for Merck&Co., but experienced a life-­‐changing event when she became the mother of a son diagnosed with Fragile X Syndrome. Lori made a significant career change to help other families navigate through the special needs planning process, and to help them secure the future they envisioned for themselves and their loved ones. Her mission is to help as many families as possible achieve their goals by ensuring all financial, legal, and government benefit resources effectively combine to work to their advantage.

Lori is involved in many efforts within the special needs community, including advocacy, participation in clinical research, co-­‐leader and member of parent support groups, and a parent mentor of Parent to Parent USA. Lori is also a member of Children and Adults with Attention Deficit Disorder (CHADD), and Parent and Founder of the Special Needs Resource Network.

Lori received her Bachelor’s Degree in Biology from Bucknell University and her Master of Science degree in Ecology from Pennsylvania State University. She also obtained a Master of Science degree in Regulatory Affairs and Quality Assurance from Temple University in Philadelphia, PA.

 

 Pat Bergmaier, CFP, ChSNC, Chartered Special Needs Consultant, 1847 Financial

Pat is a Certified Financial Planner (CFP) and has a passion for working with families. His knowledge and expertise allows him to develop comprehensive and holistic financial plans for his clients that provide the framework for making financial decisions that will help achieve their lifetime and legacy planning goals.

Pat is also a Chartered Special Needs Consultant (ChSNC).This designation has provided Pat with the knowledge to address the unique circumstances and requirements of planning for individuals with special needs a core focus of his practice. Pat received his Bachelor’s Degree in Finance from Albright College in Reading, PA and holds his FINRA Series 7, 66, 63 & 6 Securities Licenses. Pat began his career in the financial services industry in 2005 after a successful baseball career at Albright where he was awarded Conference Player of the Year during his senior season.

Prior to joining 1847Financial, Pat partnered with the MetLife Center for Special Needs Planning where his passion for working with the special needs community began. He is a board member of the Timothy School in Berwyn, PA which is devoted exclusively to teaching students with autism. He is involved with supporting many special needs organizations such as Ascend–the Asperger and Autism Alliance of Greater Philadelphia, Autism Cares Foundation, Down Syndrome Interest Groups, and PLAN of PA.

 

  Tony Ferrandino, Founder, Drew’s Hope & Senior Financial Advisor, Merill Lynch

Tony Ferrandino founded Drew’s Hope in 2007 with his wife, Katie, when their son Drew was diagnosed with Batten disease. Drew’s Hope is a non-profit foundation which is focused on raising funds for Batten disease research. As a parent of a child with a rare disease, Tony has used his personal experience to fuel his passion for advocacy. In September of 2014, Drew passed away from late infantile Batten disease. Tony serves on the Board of Directors for the Batten Disease Support and Research Association (BDSRA) and works closely with the Scientific Advisory Board to determine appropriate research funding. He received a Portrait of Courage Award in 2015 from the National Organization for Rare Disorders (NORD) for his continued efforts to raise funds for research. Tony is a Senior Financial Advisor at Merrill Lynch with over 25 years of experience in the financial services industry and he has focused on helping families with special needs children prepare financially for life’s transitions.

Moderator:
Danny_LevineDaniel Levine, Founder & Principal, Levine Media Group

Daniel Levine is an award-winning business journalist who has reported on the life sciences, economic development, and business policy issues throughout his 25-year career. Since 2011, he has served as the lead editor and writer of Burrill Media’s acclaimed annual book on the biotech industry and hosts The Burrill Report’s weekly podcast. His work has appeared in The New York Times, The Industry Standard, TheStreet.com, and other national publications.

Webinar: Growth Hormone Replacement: Not Just for Kids?

Thu, Mar 23, 2017 12:00 PM – 1:00 PM EDT

Presented by:

Susan L Samson MD PhD FRCPC FACE
Associate Professor, Department of Medicine
Medical Director, Pituitary Center at Baylor St. Luke’s Medical Center

Learning Objectives: At the end of the session the learner will be able to:

1) Discuss the testing approaches for confirmation of growth hormone deficiency in adult patients with pituitary disease
2) Understand the far reaching effects of growth hormone throughout the body
3) Describe the potential benefits and adverse effects of growth hormone replacement therapy in appropriate patients

Presenter Bio:

Susan L. Samson MD PhD FRCPC FACE is an Associate Professor of Medicine and Neurosurgery at Baylor College of Medicine in Houston, Texas. She is originally from Canada and completed her medical degree at Queen’s University (Kingston, Ontario) and Internal Medicine training in her hometown of Calgary, Alberta. She moved to Baylor for Endocrinology fellowship training and then joined the faculty. She is the Medical Director of the Pituitary Center at Baylor St. Luke’s Medical Center where she is part of a multidisciplinary team – with Dr. Daniel Yoshor (Neurosurgery) and Dr. Mas Takashima (Otolaryngology)- who are committed to excellence in surgical and clinical outcomes for pituitary patients. She currently serves on the board of directors of the American Association of Clinical Endocrinologists and is a member of the Neuroendocrine and Pituitary Scientific committee. She also is involved in training future endocrinologists as the Endocrinology fellowship program director. Dr. Samson has a basic science lab and has also been involved as a site principal investigator for pharmaceutical clinical trials of therapies for pituitary disorders. She has been awarded the Fulbright and Jaworski L.L.P. Faculty Excellence Award for Teaching and Evaluation as well as the Rising Star award at Baylor College of Medicine. Her major clinical interest is pituitary disorders including pituitary adenomas, hypopituitarism, Cushing’s disease and Acromegaly.

Register at https://attendee.gotowebinar.com/register/6691253214341976066?utm_source=newsletter_232&utm_medium=email&utm_campaign=webinar-announcement-growth-hormone-replacement-not-just-for-kids