Other Diseases

Posted on February 21, 2015 by MaryO

forums

Many of the people who post on the message boards suffer from other diseases, as well as Cushing’s. These links help to provide some information about these diseases.

~A ~

Acanthosis nigricans
This Topic on the Message Boards.

Acromegaly
This Topic on the Message Boards.

Addison’s Disease
This Topic on the Message Boards.

Adrenoleukodystrophy
This Topic on the Message Boards.

~B ~

Barrett’s esophagus

~C ~

Carney Complex
This Topic on the Message Boards.
New Support Group for Carney Complex.

Central Serous Retinopathy
This Topic on the Message Boards.

Congenital Adrenal Hyperplasia (CAH)
This Topic on the Message Boards.

Conn’s Syndrome
This Topic on the Message Boards.

Craniopharyngioma
This Topic on the Message Boards.

~D ~

Diabetes insipidus
This Topic on the Message Boards.

~E ~

Ectopic ACTH Syndrome
This Topic on the Message Boards.

Empty Sella
This Topic on the Message Boards.

~F ~

Fibromyalgia
This Topic on the Message Boards.

~G ~

Gigantism
This Topic on the Message Boards.

~H ~

Hirsuitism
This Topic on the Message Boards.

Hyperprolactinemia
This Topic on the Message Boards.

Hyperthyroidism
This Topic on the Message Boards.

Hypoalderostonism
This Topic on the Message Boards.

Hypocalcemia
This Topic on the Message Boards

Hypopituitarism
This Topic on the Message Boards.

Hypothyroidism
This Topic on the Message Boards.

~I ~

Insulin Resistance
This Topic on the Message Boards.

~K ~

Kidney Disease
This Topic on the Message Boards.

~L ~

Lyme Disease
This Topic on the Message Boards.

~M ~

Madelung’s Disease
This Topic on the Message Boards.

Menopause
This Topic on the Message Boards.

MEN Type 1
This Topic on the Message Boards.

Myasthenia Gravis
This Topic on the Message Boards.

~N ~

Nelson’s Syndrome
This Topic on the Message Boards.

~O ~

Osteopenia
This Topic on the Message Boards.

Osteoporosis
This Topic on the Message Boards.

~P ~

Panhypopituitarism
This Topic on the Message Boards.

PCOS
This Topic on the Message Boards.

Perimenopause
This Topic on the Message Boards.

Pheochromocytoma
This Topic on the Message Boards.

Pituitary dwarfism
This Topic on the Message Boards.

Premature menopause
This Topic on the Message Boards.

Primary pigmented nodular adrenocortical disease (PPNAD)
This topic on the Message Boards

Prolactinoma
This Topic on the Message Boards.

Pseudo Cushing’s
This Topic on the Message Boards

~R ~

Rathke’s cleft cyst
This Topic on the Message Boards.

ROHHAD (Rapid-Onset Obesity With Hypothalamic Dysfunction, Hypoventilation, and Autonomic Dysregulation Presenting in Childhood)
This Topic on the Message Boards

~S ~

Sheehan’s Syndrome
This Topic on the Message Boards.

Stein-Leventhal Syndrome
This Topic on the Message Boards.

~T ~

Thymoma
This Topic on the Message Boards.

Thyroid Gland Disorders
This Topic on the Message Boards.

Turner’s Syndrome
This Topic on the Message Boards.

~V ~

Von Hippel-Lindau disease
This Topic on the Message Boards.

~Z ~

Zollinger-Ellison Syndrome

Filed under: adrenal, adrenal crisis, Cancer, Cushing, Cushing's, growth hormone, pituitary, Rare Diseases | Tagged: , , , , , , , , , , , , , , , , , , , , , , | Leave a comment »

Beta-O2’s ßAir Bio-artificial Adrenal Device Shows Potential to Treat Adrenocortical Insufficiency and Other Stress-related Disorders

Posted on February 19, 2015 by MaryO

ROSH HAAYIN, Israel, February 19, 2015 /PRNewswire/ —

Beta-O2 announced today the results of a series of pre-clinical studies demonstrating that the company’s ßAir Bio-artificial Adrenal device could offer a treatment for adrenocortical insufficiency and other stress-related disorders. The results are published in the current issue of the Proceedings of the National Academy of Sciences of the United States of America (PNAS). PNAS is one of the world’s most-cited and comprehensive multidisciplinary scientific journals, publishing more than 3,800 research papers annually.

The article, titled “Transplantation of bovine adrenocortical encapsulated in alginate“ can be viewed here .

The studies cited in the article were led by Professor Stefan Bornstein and Dr. Mariya Balyura at University Hospital Carl Gustav Carus Dresden.

Professor Bornstein said, “The Bio-artificial Adrenal supersedes an immunosuppression completely. The donor cells will be protected against the immune system responses of the patient. The system lets hormones pass the half-permeable walls into the body of the receiver. Our vision is that people in the future may even receive adrenal cells from another species, as, for example, from the pig. The device creates the biotechnical conditions for it.”

Professor Bornstein continued, “I am convinced that Beta-O2’s ßAir Bio-artificial Adrenal device will revolutionize the therapy of adrenocortical insufficiency. Many more patients could benefit from transplantation because the recipients wouldn’t need any immunosuppressive drugs, at all.”

ßAir is an implantable device that provides immune protection and optimal living conditions for cells implanted within it. It has thus far proven successful in providing a viable environment for islets of Langerhans or beta cells, to thrive and naturally produce insulin on demand, a necessary function missing in people with type 1 diabetes. The product for type 1 diabetes is called the ‘ßAir Bio-artificial Pancreas’. Three patients are currently implanted with the ßAir Bio-artificial Pancreas as part of an ongoing clinical study in Sweden.

“The news today indicates that the same immune protection system being used to treat type 1 diabetes patients in the clinical trial in Sweden, also appears to work well for other types of functional cells, such as adrenal cells. We found that when placed in the ßAir, the life span of the adrenal cells significantly increased. The capacity of the adrenal cells for stable, long-term basal hormone release significantly improved as well, as did their response to various stimulating hormones. Additionally, as described in the PNAS article, we learned that ßAir has xeno transplantation or cross species capabilities. For example, using the ßAir, pig adrenal cells can be transplanted into a living being other than a pig and still remain healthy and function properly,” said Dr. Dan J. Gelvan, chairman of the board of Beta-O2.

Dr. Gelvan continued, “What all this means is that transplantation of a ‘ßAir Bio-artificial Adrenal’ with cells from another species could prove to be a treatment option for patients with adrenocortical insufficiency and other stress-related disorders. This is important because current treatment options for adrenal insufficiency are limited and have unpleasant side effects. The study findings reported in the PNAS article are also significant as they offer a sneak preview of the huge potential of ßAIR. If it can provide a viable environment for many different types of cells, then ultimately it may be prove to afford an effective treatment, if not a cure, for a long list of illnesses.”

About Beta-O2 Technologies Ltd.

Beta-O2 Technologies Ltd. is a biomedical company developing a proprietary implantable bioreactor, the ßAir. The company’s flagship product is called the ßAir Bio-artificial Pancreas. It is in development as a treatment and potential cure for type 1 diabetes (T1D). ßAir was first designed to address the main problems of the otherwise successful procedures in which islets of Langerhans (i.e. pancreatic endocrine cells) are transplanted in diabetic patients, such as the need for life-long immunosuppressive pharmacological treatment and limited functionality of the transplanted islets over time due to an insufficient oxygen supply. The company’s second pipeline product is the ßAir Bio-artificial Adrenal for the treatment of adrenocortical insufficiency and other stress-related disorders. This product is currently at the pre-clinical stage of development. Beta-O2 investors include Aurum Ventures, Sherpa Innoventures, SCP Vitalife Partners, Pitango Venture Capital and Saints Capital.

For more information, please visit http://www.beta-o2.com .

Press contact:
Marjie Hadad
MH Communications
+972-54-536-5220
marjie@netvision.net.il

 

SOURCE Beta-O2 Technologies Ltd

Filed under: adrenal, adrenal crisis, Health Care | Tagged: , , , | Leave a comment »

Cushing’s Email Newsletters?

Posted on February 19, 2015 by MaryO

newsletters

 

Cushing’s folks –  would you be interested in occasional email newsletters returning?

If five or more people are interested, we’ll try this again.  I think it’s been a couple years since the last email newsletters were sent out.

If you are interested, please sign up here.  If the form takes too long to send, please email me.

NO SPAM will be sent.

Thanks!

Filed under: adrenal, adrenal crisis, Cushing's, Meetings and Conferences, pituitary, Round-up | Leave a comment »

World RARE Disease Day is only two weeks away!

Posted on February 16, 2015 by MaryO

world-rare-disease-2015

World Rare Disease Day is an annual observance to raise awareness for rare diseases, and improve access to treatments and medical representation for individuals with rare diseases and their families. Created by European organization EURORDIS in 2008, this day is celebrated on the last day of February each year. The 8th annual World Rare Disease Day will be held on Saturday, February 28, 2015. On this day, various activities take place globally.

Looking for ways to get involved?

Global Genes™ holds a variety of awareness raising activities starting on World Rare Disease Day and continuing throughout the month of March (because RARE deserves more than a day). Please join patients, families, friends, caregivers, scientists, physicians, researchers, health care providers, policy experts and our team to raise RARE disease awareness. Here are a few ways you can get involved!

February/March Events for Rare Disease Awareness
•    Tweet Chat in Partnership with WEGO Health – Focusing on community events and facts & stats surrounding World Rare Disease Day. Thursday, February 19 at 2PM EST, participants can log on to Twitter and follow hashtags #RARETalk and #hachat to share ideas and win Global Genes & Wego Health swag bags, Walgreens gift cards, and more!

•    Global Genes 1st Annual Denim Dash Virtual 5k Run/Walk for Rare Disease (Virtual/Global) March 21-29, 2015 –The Denim Dash was created through collaborative efforts between Orphan Drug Solutions and Global Genes as their first annual virtual 5K event. This virtual 5k is designed to ensure that anyone, anywhere, can participate and show their support and raise awareness for patients, family and friends of the Rare Disease Community. The cost to register is $35 and includes Denim Dash t-shirt, race bib and Blue Denim Genes Ribbon. In order to receive a t-shirt, registration must be completed by 3/6/2015. Register here.

•    Give RARE (Online) – Give RARE, on March 3rd, is a single day for the world to GIVE to RARE disease! In partnership with Zenzaga, the Give RARE technology platform allows rare disease nonprofits to sign-up easily to create a donation page, raise funds for their cause and get access to win prize funds from sponsors. Grants will be given throughout the day. Register by February 15th and your nonprofit will have a chance to win a year’s worth of URS charity filings (worth $5000) from launch partners Charity Compliance. Register your cause today!

•    ‘I Love Someone RARE & Beautiful.’ T-shirts in Partnership with the Gwendolyn Strong Foundation – Global Genes and the Gwendolyn Strong Foundation have partnered once again by bringing back the popular ‘I love someone RARE & beautiful.‘ tee in celebration of World Rare Disease Day. This is a LIMITED EDITION item, so get them while they last! They can be purchased here.

•    Wear That You Care™ campaign – All across the world people participate in supporting rare disease awareness and Wear That You Care by wearing the Blue Denim Genes Ribbon™ and their favorite pair of jeans on World Rare Disease Day. Wear That You Care campaigns take place locally—supporters often urge their offices, teams or other groups to wear jeans on a specific day and make a donation.

•    Social Media Awareness – Patients, advocates, and industry alike can grow social awareness by sharing photos, information, and events with Global Genes’ Facebook, Twitter, and Instagram. Where supporters can tag their photos or posts with hashtags #WearThatYouCare, #WRDD2015, #RAREadvocate, and #CareAboutRare to help draw attention to their content. Additionally, supporters can visit www.globalgenes.org/CareAboutRare and upload their photo into photo frames to use as social media profile images to further help spread awareness.
WRDD template 6 version 3 2014       WRDD template 4 2014       WRDD template 5 2014 2       WRDD template 2 denim back 2014 1 2

 

Additional community events are located on the Global Genes website: 
http://globalgenes.org/2015-world-rare-disease-day-community-events/
Join the movement! Advocate for the over 350 million with a RARE disease today!      

GGP-Rare_logo-tagline-v4_final
Global Genes is a 501(c)(3) nonprofit organization advocating for rare disease globally.

 

Filed under: adrenal, Cushing's, Meetings and Conferences, pituitary, Rare Diseases | Tagged: , , , , , , , , , , , , , | Leave a comment »

Helpful Doctors are Returning!

Posted on February 13, 2015 by MaryO

harvey-surgery

We’ve done this in the past and I’d like to do it again.

Our earlier database was hacked and I didn’t feel it was worth rebuilding because so much of the info became outdated.

If you are happy with your team of doctors and feel like you have gotten good care please list them, their specialty, where they are located and anything else you’d like to say.

If you don’t want to list them here, you may use the form at http://www.cushings-help.com/forms/doctor.htm

I’m making a continually updating database so you can watch it unfold here: https://www.obvibase.com/p/dbz5EouPMSME

The Non-US doctors will be listed here: https://www.obvibase.com/p/opDSfNQ13ZHX

I can tell it’s going to be a wide page so you’ll have to scroll across the bottom. As more entries (besides my test one!) are added, you can sort by state, country, etc.

Thank you in advance! A good doctor can change a life…but not every good doctor is good for every patient.

Filed under: adrenal, Cushing's, pituitary, Rare Diseases | Tagged: , | Leave a comment »

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