A rare disease can be isolating. It’s difficult to find others to talk to who truly understand the shock of diagnosis, the lack of awareness, the impact of symptoms, and the confusion over treatment.
Having a trustworthy group of individuals who can not only sympathize, but provide guidance, back up fears, answer questions, and validate experiences with a “I thought it was just me!” can make a world of difference. It offers those with rare diseases a sense of belonging and confidence. From the newly diagnosed to those who’ve experienced years managing the disease, it can lead to valuable insights or further questions to raise with medical professionals.
It’s with this sense of fostering community that the Acromegaly Ottawa Awareness and Support Network launched Acro-Connect. This series of guided discussions is becoming a lifeline for acromegaly patients not only in the Ottawa area but even further afield.
Held virtually for the time being to keep members safe from COVID, the sessions focus on a theme. A member of the Acromegaly Ottawa group or a professional related to the topic leads the group through a series of open questions, allowing everyone a chance to share their experiences and thoughts. It’s a warm, welcoming, and much needed way to feel understood and learn from others sharing the same journey.
The next session will be on mindfulness on September 1, 2020, at 7:30pm Eastern Time. Email firstname.lastname@example.org for details and a link to join the group.
Future sessions are planned for the coming months—contact Acromegaly Ottawa for more information or follow the Facebook page for updates.
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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