AcroVoice: Understanding how patients with acromegaly define their condition and make treatment decisions
We would like to announce the Princess or Prince Award for the upcoming National/International Acromegaly Conference Canada. This award and scholarship was established a few years ago through the Acromegaly Community and this award is very special and honours a very special person. The award is in recognition of Tanya Angus, who decided to bring awareness to the general public of Acromegaly. We are honoured to keep this wonderful tradition going and will be offering this award and scholarship again.
How can you win this scholarship? As awareness of acromegaly is so important, we are asking people diagnosed with acromegaly, to write a paper on what you have done in the last year that has help raise awareness for acromegaly.
There will be a 3 person panel that will pick the winner.
The scholarship will cover your travel to and from Toronto and hotel stay there for 2 nights to attend the conference. The last day to submit your story is June 30th, 2019, 12 pm PST. Please include your phone number and email address.
The winner will be contacted on or before July 15th, 2019.
Applications please submit your story to: firstname.lastname@example.org
This year we had 11 ambassadors come together from most of all the provinces in Canada. Our main focus this year was to do a acromegaly ambassador photo shoot and also work on more acromegaly proclamations in different provinces to get Nov 1st Acromegaly Awareness Day recognized and to get on the news, in the newspapers and social media, via Facebook and Twitter.
With the help of a sponsor and media company, to help bring this all together. The acromegaly ambassadors were successfully able to bring this together and have a very powerful week.
Santino Matrundola, who is an acromegaly ambassador and professional photographer arranged with the media company to bring us all in over 3 different days, to do a photo shoot at his studio with all of us. The media company asked us to do a short paragraph of what the importance was for all of us to say about our mission as an acromegaly ambassador for Nov 1st.
Then a gallery was rented in Montreal, Quebec and we had our photos and who we were, our mission statement and where we were all from put up to show cases for the media, and general public. This was done in September, and it was amazing, most of the ambassadors were able to attend and speak to the general public and share our journeys, and we had some media attend.
The amazing part of this night for all of us ambassadors, we had 2 acromegaly people attend, as they had heard or read about this night, and came to meet others with acromegaly, as they had never meet anyone else before. We were all moved and there was lots of hugging and tears. This project that Santino wanted to do to help bring much awareness to Acromegaly, was something he truly wanted to do from his heart, and was able to do with his amazing talent, and he called the project “Seeing the Light”.
PLEASE CLICK ON THIS LINK TO READ AND SEE OUR PHOTO’S.
We are also in the process of keeping this movement going by hopefully displaying our photo’s and write-ups in other galleries across Canada. (still in the works). Through the process of all of us coming together again this year and working together for 8 months to prepare, we were able to accomplish:
In Ottawa, a new support group page was started and with the social media around Nov 1st with Dianna Cook- Sauve being on 2 different radio stations and write-ups in the newspaper, her Facebook page took off for new members in the Ottawa region. Dianna is now in the process of having a meet and greet hopefully at the end of January to bring everyone together, she has also formed together a few acromegaly patients within Ottawa, and is the process of setting up Ottawa Acromegaly Support Group. So exciting for all in the surrounding area.
We know have 7 acromegaly support groups in 7 different provinces formed in Canada out of 13 and hopefully new chapters will form this upcoming year.
The Vancouver Acromegaly Support Group and Atlantic Acromegaly Support Group, were asked if the two would come together and do a write up for Acromegaly Awareness Day of who we were and our mission for acromegaly, by another sponsor and media company. We were able to do this in a very short time and our article was posted in TheSun.com Canada, which will run everyday for a month and a half and will be seen in all provinces of Canada.
The Atlantic Acromegaly Support Group did a absolutely amazing thing, they came up with the idea to have blue t-shirts made, with the saying of “Ask Us About Acromegaly”, and wore on the news for there awareness day of acromegaly. Absolutely brilliant idea, and I personally love it as this is a very creative way to spread the word of people feeling comfortable to ask about Acromegaly, and have acromegaly share their knowledge of acromegaly, to bring much more awareness.
Last year, which was the first year that we formed this group, we brought awareness about acromegaly in Canada, we were able to reach 6.3 million people through social media, the news and write-ups in the papers. I am looking forward to finding out the results in the very near future of how many people we were able to reach in Canada for this year.
There is still a lot more to be done in Canada, and we are moving forward to create a National Acromegaly Canada Society, to help bring more knowledge and awareness and support to those who are still not diagnosed and those that have acromegaly and are alone.
By Deanna Badiuk
President/Founder/Director of the Vancouver Acromegaly Support Group
Acromegaly Ambassador of Canada
From J D Faccinetti – cofounder – I met Santino Matrundola about a year ago in Vancouver at the Canadian Acromegaly gathering of physicians and patients. We were both asked to present, he his story and I our work with Pituitary World News. He made an excellent presentation and walked the audience through a riveting account of his experience with acromegaly. See, what makes his story compelling is not only that he is an extremely talented photographer, but that it was this disease, which rendered him almost blind in one eye, that compelled him to focus his considerable artistic talents in photography.
Read the rest of the article here.
Acromegaly Awareness Day is November 1st ...
Andre the Giant and his Gigantism is what you might be more familiar with. Gigantism and Acromegaly are the same disease, and they develop from the same region in the body, the pituitary gland. But at different times in our life. In children, gigantism occurs when this gland, located near the brain, produces an excessive amount of growth hormone (GH), which triggers bones to grow in length as the growth plates are still open, and causes subsequent, abnormal growth spurts. Acromegaly on the other hand, also caused by excess growth hormone, only occurs in adulthood, after the growth plates have closed, and bones growth grows wide (broad).
Acromegaly cannot be cured and is categorized as a "Very Rare" disease which is fewer than 2000 active cases per year in Canada. 1 person per 1000 have a rare disease, in comparison, 1 person in every 10,000 have Acromegaly. In Canada there are currently estimated to be 2,000 - 2,500 people who are diagnosed and living with acromegaly, and believed by specialist that many people have acromegaly, but not yet diagnosed.
Acromegaly is caused by a benign tumour on the pituitary gland which is located at the base of the brain, straight back between your eyes. The pituitary is your master gland that regulates all hormones thus controlling proper function of all major organs.
Some tumours are the size of a pin head while others are golf ball size and larger becoming wrapped around the carotid artery and or pushing on or damaging the optic chiasm. Microscopic tumours are just as devastating as large tumours.
Acromegaly is the production of excess GH (growth hormone) caused by the tumour. Excess GH usually causes excess growth of soft tissue such as nose, lips, tongue causing obstructive sleep apnea, gaps forming between teeth as a adult, skin tags, , among multiple other health problems. Hands and feet also get bigger resulting in bigger ring size and bigger shoe sizes as well as weight gain.
Others experience enlargement of organs including the heart, liver, pancreas, bile duct. Diabetes, Colon polyps, enlarged cystic disease, Jaw bone growth creating severe under bite, gapping of teeth and misalignment of the jaw, skull & brow bone growth, orbital socket growth, spine growth creating curvature of the spine, Temporalis muscle stretching and constriction.
We experience severe headaches or migraines, vision problems, heat intolerance, excess sweating, muscle deterioration and weakness, severe joint pain, exhaustion. Most joint and muscle issues and exhaustion are on a daily basis.
This is a deadly disease if left untreated that can shorten life span by 10 - 20 years ... if not in remission, it is a devastating and debilitating disease. Most acromegalics like me "are not" in remission and will be on injectable medications for life that cost thousands of dollars per month.
Transsphenoidal Surgery is the first recommended option. This surgery at the base of the Brain is performed by a Neurosurgeon. Medications are the next option and finally radiation.
Specialists in the care of my Acromegaly include - Endocrinologist, Neurosurgeon, Cardiologist, Electrophysiologist, Gastroenterologist, Urologist, ENT, Optometrist, Orthopedist, Oral Maxillofacial Specialist.
Famous people with Acromegaly ...
Ted Cassidy - Lurch Adams Family
Carel Struycken - Lurch, Adams Family Movies
Richard Keil - 'Jaws' in James Bond movies
Rondo Hatton - House of Horror movie
The Great Kahli - American Wrestler
Paul Benedict - Bentley on the Jefferson's
Kevyn Aucoin - an American make-up artist, photographer and author.
Deanna was featured in the Huffington Post in an article entitled I Had To Meet Others With My Rare Disease To Learn How To Lead A Normal Life.