Pagets Awareness Day

Paget’s Awareness Day, happening on January 11, is all about spreading the word regarding the impact of this bone disease. Just like other parts of the body such as blood, skin, and organs, bones constantly repair and renew themselves throughout our lives. Paget’s Disease disrupts this process, potentially leading to deformities or fractures over time. The spine, skull, pelvis, and femur are the areas most frequently affected.

The Origins of Paget’s Awareness Day

English Baronet Sir James Paget first identified this bone disorder while conducting pathological research. His initial paper on the condition was published in 1877, where he suggested that the symptoms stemmed from an inflammatory response in bone tissues. It wasn’t until decades after his passing that researchers understood the true nature of the disease. Sir Paget’s fascination with the condition began with a coachman suffering significant leg pain who visited the hospital where Paget worked. During the examination, he noticed abnormalities and enlargements in the patient’s thigh and shin bones. For 26 years, Paget monitored and offered pain relief treatments while studying the disorder’s essence. Eventually, the coachman’s legs became so bent that he couldn’t bring his knees together, and his skull enlarged, leading him to outgrow his hats.

In 1973, Ann Stansfield founded the Paget’s Association to support research so her husband, Alf, could receive improved treatment for his condition. Among her primary goals for establishing the organization was raising awareness about the disease among medical professionals and the public. The inaugural Paget’s Awareness Day took place on January 11, 2019, which coincided with the 205th anniversary of Sir Paget’s birth. Each year on this day, members of the Paget’s Association and its community are encouraged to wear blue and engage in at least one activity to educate the public about this painful disease.

Timeline of Paget’s Awareness Day

• 1973: Ann Stansfield, with assistance from Dr. Allan St. John Dixon, establishes the Paget’s Association.
• 1983: Ann Stansfield receives a Most Excellent Order of the British Empire for her pioneering work with the Paget’s Association.
• 1990: The first support group for Paget’s Disease patients is launched in Manchester, England.
• 2019: The National Association for the Relief of Paget’s Disease marks its first Paget’s Awareness Day.

Available Treatments for Paget’s Disease

Bisphosphonates are the primary treatment, working to inhibit bone remodeling, thus slowing the disease’s deforming effects.

Recognizing Paget’s Disease

If you’re experiencing persistent pain in your limbs, spine, or skull, or an unusual feeling of warmth in a specific area, consider getting your blood tested for Paget’s.

When Do Symptoms Start?

Most Paget’s patients don’t notice significant symptoms until they’re over 50.

How to Participate in Paget’s Awareness Day

• Wear Blue: Royal blue is the color associated with Paget’s Disease awareness. Wearing blue and explaining its significance to others can help spread the message. You can also visit FindNoMore.net to buy blue items featuring the official logo.
• Run for Paget’s: The Paget’s Association encourages supporters to combine healthy activities with advocacy by participating in running events dedicated to finding a cure for Paget’s Disease. Sign up for a 5k run in your area and wear royal blue to show your support.
• Speak About It: Spread awareness by sharing that Paget’s Disease isn’t as rare as some think. Not all with Paget’s show symptoms, and discussing these facts on January 11th might help you connect with someone affected.

Five Fascinating Bone Facts

1. More Than You Realize: The human body contains 206 bones, all crucial for maintaining our structure.
2. Legs Lead the Way: The femur, or thigh bone, is the body’s longest and strongest bone.
3. Dynamic by Nature: While bones stop growing in length after puberty, their density and strength continue to evolve as we age.
4. Milk and Bone Health Myth: A Harvard study found no link between cow’s milk and bone health.
5. Alone Amongst Us: The hyoid bone is unique as it doesn’t connect with any other bone, located at the base of the tongue.

The Significance of Paget’s Awareness Day

• Community and Support: Since Paget’s Disease isn’t widely recognized, many patients feel isolated. Advocacy can help them feel supported in their struggles.
• Boosting Research: Greater awareness could lead to an increase in Paget’s Association membership and funding for research to better understand and manage the disease.
• Recognizing Advocates: January 11th is a day for advocates to celebrate their year-long efforts, with events like theater shows, craft fairs, and tea gatherings strengthening community bonds.

What is the date of Pagets Awareness Day every year?

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