Alberta Pituitary Patient Society News

Stanford Healthcare: Pituitary Patient Education Day

Mon, 21 Oct 2024 00:00:00 GMT

Join Stanford Health Care physicians, as well as patients with pituitary disease and their family and friends, to learn about pituitary disease, the latest medical treatments and surgical innovations, and more, on Saturday, November 9, 2024.

https://med.stanford.edu/neurosurgery/events/2024pituitaryday.html

Sleep; Is this an issue for you?

Mon, 23 Sep 2024 22:44:48 GMT

Click here to complete the survey
Pituitary disorders can lead to sleep disorders and are common in people with these conditions due to the significant role hormones play in regulating the sleep-wake cycle. The pituitary gland, often called the "master gland," is crucial in hormone production and regulation. It releases hormones that control various functions, including growth, metabolism, reproduction, and stress responses. The pituitary gland also affects circadian rhythms (your internal body clock), which regulate sleep-wake cycles. People with Acromegaly, Cushing's, hypopituitarism, and prolactinomas often report sleep issues and fatigue when describing their . . . Read More

SkipTheDepot for APPS this Spring

Sun, 10 Apr 2022 21:20:50 GMT

This spring, donate your beverage containers to the Alberta Pituitary Patient Society through SkipTheDepot.

Your donation will help us continue our mission to support pituitary patients, raise awareness of pituitary conditions, and connect with health-care professionals. Every dollar counts.

To see if SkipTheDepot is in your area, go to the website.

You can donate in 3 simple steps:

Get started here or download the app.
Choose APPS as your charity.
Arrange your pick-up and prepare your bags.

Use the promo code NewYearNewMe and APPS will receive 100% of your donation.

Bridge, Tower lit up for adrenal insufficiency

Tue, 29 Mar 2022 20:13:38 GMT

Edmonton's High Level Bridge and the Calgary Tower will be lit up on Friday, April 1 to mark Adrenal Insufficiency Month in April.

Light Up for Rare February 28

Wed, 02 Feb 2022 03:00:00 GMT

#LightUpForRare

This Rare Disease Day, participate in the Global Chain of Lights and share your colours.

Light or decorate your home with the Rare Disease Day colours at 7 p.m. MST on February 28, 2022. Take a picture and share on social media with the tag #LightUpForRare

For more information, see the attached toolkit.

Webinar Feb 24: Rare Disease Day

The Canadian Organization for Rare Disorders (CORD) is hosting a webinar on Canada’s Rare Drug Strategy on Thursday, February 24 from 10–11 a.m. MST. For more information and to register, click here.

Webinar Feb 28: Acromegaly Through the Eyes of a Physician, a Nurse, and a Patient

The World Alliance of Pituitary Organizations (WAPO), the Federation of International Nurses in Endocrinology (FINE), and the International Society of Endocrinology (ISE) are jointly hosting this webinar on Monday, February 28 from 8–9:30 a.m. MST. For more information and to register, click here.

Christmas Cookies 2021

Sat, 25 Dec 2021 02:26:34 GMT

We are pleased to share out favourite cookie recipes compiled from our member submissions. Enjoy!

APPS Recipe Book Final.pdf

Bridge Light-up for Pituitary Awareness

Sat, 23 Oct 2021 21:46:43 GMT

On October 26, Edmonton's High Level Bridge will be lit up in red, white, and silver to raise awareness of pituitary disease in Alberta.

October is Pituitary Awareness Month.

Attention Philips CPAP Users

Fri, 23 Jul 2021 22:00:00 GMT

Philips has issued a recall notification for specific devices. Please consult your physician or CPAP provider for guidance.

Medical Device recall notification

Canadian Acromegaly Registry

Tue, 20 Jul 2021 03:57:23 GMT

The Canadian Acromegaly Registry is a Canada-wide registry that captures information from people diagnosed with acromegaly. Information is then used in a variety of ways to improve acromegaly care.

HOW IT WORKS?

Direct-to-patient: Information on quality of life is collected directly from the patients themselves.

In-clinic: Medical information is collected in specialty medical clinics attended by acromegaly patients.

https://www.ucalgary.ca/research/participate/study/14830/canadian-acromegaly-registry

Download and share for pituitary awareness

Mon, 19 Oct 2020 20:44:19 GMT

The World Alliance of Pituitary Organizations (WAPO) released a poster this October for Pituitary Awareness Month to highlight 8 diseases caused by pituitary tumours.

Download this poster and share it far and wide with health-care professionals or others in your community. Every bit helps!

Are you Acromegaly Aware? Know the signs

Fri, 01 Nov 2019 13:00:00 GMT

November 1 is Acromegaly Awareness Day.

Acromegaly is a rare hormonal disorder that occurs when the pituitary gland produces too much growth hormone over time. In 95 percent of cases, acromegaly is the result of a non-malignant tumour of the pituitary gland. In rare cases it may be caused by a tumour in the lungs, pancreas, or adrenal glands. Although acromegaly generally affects middle-aged adults, it can strike at any age. In children, this condition is often referred to as gigantism.

The enlargement of bones and tissues, particularly the hands and feet, is a common sign of acromegaly. Over time, people will begin to notice their rings, shoes, or gloves no longer fit. They may also notice an enlarged tongue or more widely spaced or misaligned teeth. Or they may notice other changes to their facial features, such as a protruding jaw or brow, thicker lips, or coarsened skin.

Because the physical changes associated with acromegaly occur gradually, often over several years, those with this condition may go undiagnosed for some time. At least 2,000 Canadians are affected by acromegaly, with still more waiting to be diagnosed. Acromegaly is usually treated with surgery, medication, or radiation.

Acromegaly symptoms can vary from person to person but generally include:

enlarged hands and feet
misaligned or widely spaced teeth
enlarged tongue
protruding jaw or brow
coarsened, oily skin
headaches
vision changes
excess sweating or body odour
gradual deepening of voice
joint pain
tingling or pains in the hands
increased body hair
severe snoring or sleep apnea
loss of libido

If you are experiencing one or more of these symptoms, please see your doctor.

Acromegaly trivia: The term acromegaly comes from Greek words meaning “extremities” (akros) and “big” (megas). The term was proposed in 1886 by Pierre Marie, a French neurologist, who published the first description of the disease and its pathology.

AcroVoice: Eliciting the Patients’ Perspective on Acromegaly Disease Activity

Fri, 01 Nov 2019 12:30:00 GMT

Pfizer conducted the AcroVoice study between November 2017 and July 2018 to understand how patients with acromegaly defined disease activity and treatment success.

Advocacy and support groups, including APPS, helped find patient volunteers to participate in the study. 100 patients with acromegaly in the United States and Canada took part.

In telephone interviews, patients identified five factors they considered to be important in describing disease activity:

· Two clinical factors: the size of the pituitary tumor, and the levels of a hormone called insulin-like growth factor I (IGF-I for short), which can be elevated in patients with acromegaly.
· Three patient-centered factors: related health conditions, symptoms, and quality of life.

A similar study, called ACRODAT, was carried out with doctors who treat acromegaly.

Find the full article—access is free—here: https://link.springer.com/article/10.1007%2Fs11102-018-00933-9