Acromegaly Support Conference 2019: Managing Pain

The second presentation at the 2019 International Acromegaly Conference, held March 20-22 in New Orleans, was an illuminating and—judging by the number of questions asked by attendees—popular presentation on acromegaly and pain, presented by Dr. Angel Rigueras. Dr. Rigueras is a physiatrist, specializing in pain and pain management.

Pain is the physical, psychological, and spiritual reaction to an injury and has a tremendous impact on a person’s ability to function and their quality of life. Those of us with acromegaly are all too familiar with the pain caused by the bone growth and soft tissue swelling from the excess growth hormone and by the pressure of the tumour on structures within our heads.

Dr. Rigueras explained that acromegaly patients’ number one pain is headaches, generally caused by changes to the neck, jaw, and upper back. (Side note: did you know there are 400 different types of headaches?!) This is followed by arthritis and osteoarthritis, caused by joints changing—the unnatural shape causes the joint to stop working properly, thus causing pain. Carpal tunnel pain is also common. Adding to the problem is the prevalence of obstructive sleep apnea, which disrupts sleep, leading to a lower pain threshold.

So what is chronic pain? It’s defined as pain that has lasted for more than six months, generally having significant psychological and emotional effects and limiting a person’s ability to fully function. Dr. Rigueras stressed that a patient’s medication levels and condition must be closely monitored. If chronic pain is not treated with the proper medication, a patient may develop debilitating pain. If the medication is not increased or changed to reflect this, it may become impossible for the patient to be mobile, which could lead to the de-conditioning of muscle groups, repetitive testing, and perhaps psychological deterioration. Quick treatment is key to getting the pain under control and starting rehabilitation.

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Acromegaly Support Conference 2019: A Patient’s Learning Experience

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Heather Elder (left) and Dianne Sauvé (right)

Hello acromegaly friends and families,

We have lots to share with Ottawa Acromegaly Awareness and Support Network.

President Dianne Sauvé and myself (Heather Elder, VP) recently attended the 2019 International Acromegaly Conference, held March 20-22 in New Orleans.

This incredible event allowed us to meet over 200 individuals connected to the acromegaly community—patients from around the world, supportive family and friends, medical professionals, and pharmaceutical representatives.

The conference focus was patients and physicians working together for improved healthcare for acromegaly patients. Each session offered excellent insights and advice.

With so many ideas and conversations to share, we’d like to explore some key takeaways in a series of posts. First up: strategies for coping with acromegaly, from diagnosis to daily life.

Catherine Jonas, a licensed marriage and family therapist with a speciality in working with those who have (or whose loved one has) a chronic illness, spoke about “My Role in Coping with Acromegaly”.

Continue reading “Acromegaly Support Conference 2019: A Patient’s Learning Experience”

Funding support for Acromegaly Ottawa!

Good Tuesday morning to everyone! We have great news to share. Yesterday marked the beginning of a new week but it also marked a new beginning for Acromegaly Ottawa Awareness & Support Network. We have received confirmation that we are the recipients of a grant from Pfizer Canada!

Pfizer Canada

We can now move forward with fulfilling our mission to build awareness for acromegaly and provide support to patients. We are a young group but we will reach out to our community through educational activities and patient support initiatives that will echo what we want patients to know: You are not alone.

More information to come!

Dianne Cooke-Sauvé
President