Today we are launching our brand new Digital Disease Spotlight. This is a week long campaign to shine a light on a specific disease or condition.
While diseases and conditions might be individually rare, the challenges they pose for those affected are common to people across the globe. These campaigns aim to educate, raise awareness and we hope that by sharing these campaigns with our powerful RARE community you can help us to highlight them and drive for change in research and treatment.
Creating a clear picture
Sometimes in the rare disease and medical world the sheer amount and different types of information available online can be overloading. Jargon and statistics can boggle the mind and you really need to know that what you are reading is from a reputable source. It can be difficult to decipher the complicated medical terms and percentages from the really simple yet ultra important things like 'what a condition is or why it happens, how you can identify it and what treatments are out there'. To tackle this we have pieced together all the basics and snipped them into one handy infographic. So next time you feel swamped by information overload you can refer to this resource and please share to raise awareness of acromegaly.
Acromegaly is a rare condition where the body produces too much growth hormone (GH), causing body tissues and bones to grow more quickly. Growth hormone is produced by the pituitary gland situated behind the bridge of your nose at the base of the brain. Acromegaly is caused by benign tumours of the pituitary gland which cause the over production of GH.
Symptoms of acromegaly develop slowly over time, leading to changes in the bone and soft tissue, particularly of the hands, feet, and facial features.
Acromegaly is usually diagnosed in adults aged 30 to 50, but it can affect people of any age. When it develops before the end of puberty, it is known as "gigantism".
Acromegaly can cause a wide range of symptoms, which tend to develop very slowly over time.
Please see the infographic below for more information.
For more information about acromegaly from recommended sources please use the buttons below:
For Support and to find out more about acromegaly from our Digital Disease Spotlight campaign you can read and listen to Dan Jeffries story to find out how he was inspired to create something positive from his diagnosis. Kara LaFrance tells us how not giving up is the only option when it comes to her personal battle with acromegaly. We also speak with Dr Niki Karavitaki, Senior Clinical Lecturer in Endocrinology and Honorary Consultant Endocrinologist at the Queen Elizabeth Hospital Birmingham where she co-leads the Pituitary Service and Pituitary Multi-Disciplinary team (MDT) to gain her insights and perspective of the rare condition.
You can also read Our RARE Book review by David Rose, Loving large: A Mother’s Rare Disease Memoir is an insight into one rare disease family’s diagnostic odyssey. This book follows the journey of Patti Hall and her son with a rare form of acromegaly, called gigantism. Living life with a rare disease is complicated and getting the diagnosis is only a small part of that journey, if anything, it’s just the start.
Rare Revolution Editor