It may seem strange to think about, but bone is actually living tissue that constantly breaks down and rebuilds. When a person contracts Paget’s disease, this cycle doesn’t work as it should, causing bones to break down faster than usual. The new bone that forms is weaker and can cause deformities. It sounds similar to osteoporosis, and in fact, many doctors will test to rule out Paget’s first before diagnosing osteoporosis. However, the cause of Paget’s disease remains something of a mystery.
What is known is that Paget’s disease is a long-term condition that leaves bones weak and misshapen. It can happen in any bone but most often affects the skull, pelvis, spine, upper arms, thighs, and legs. The disease usually affects people older than 55, especially those with British ancestry. Paget’s Awareness Day, held on January 11 this year, aims to teach people how this disease impacts lives.
History of Paget’s Awareness Day
Sir James Paget, an English doctor, became interested in the disease when a coachman came to the hospital where he worked, complaining of severe pain in his legs. When Paget examined him, he noticed that bones in the man’s leg were enlarged and deformed. Over the next two decades, Paget treated the man’s pain and studied this new disease.
Paget’s Awareness Day began on January 11, 2019, marking 205 years since Paget was born. Each year, the Paget’s Association and its supporters are encouraged to wear blue and take some actions to help spread awareness about this painful condition.
What causes Paget’s disease?
The cause of Paget’s is not yet completely clear, but some things can make a person more likely to get it.
- There is a higher chance of developing Paget’s disease if a close relative has had it.
- It’s more common in people with English, Scottish, Central European, or Greek ancestry,
- People who’ve had certain viral infections, like measles, RSV, or paramyxovirus, might be at greater risk.
- Children who grew up in a home with wood fire heating may have an increased risk of getting the disease.
What are the main symptoms of Paget’s disease?
Paget’s often causes abnormal bone growth, which can compress bones and damage nearby nerves.
Possible signs of this can include:
- Sciatica, felt as pain traveling from the spine down into the legs
- Numbness or tingling in the affected limbs
- Partial loss of movement in the limbs
- Balance problems
Paget’s can also result in fragile bones that are more likely to break. People with the condition need to take extra care when moving. In more serious cases, it can result in loss of bowel control (bowel incontinence) or loss of bladder control (urinary incontinence). At the first signs of this, it is essential to seek specialist healthcare advice.
How is Paget’s disease treated?
Paget’s disease cannot be cured, but treatment can help manage symptoms. People without symptoms might not need treatment, but doctors will monitor their health over time. These treatments aim to manage symptoms, strengthen bones, and improve quality of life.
- Bisphosphonates, such as Reclast, which help slow down bone breakdown, making bones stronger and reducing the risk of problems like fractures.
- Medicines like Advil and Nurofen can help reduce pain caused by the disease.
- In rare cases, surgery may be needed to fix fractures or correct bone deformities, including cosmetic or dental issues.
- Vitamin D supplements. If someone has low vitamin D levels, supplements might be recommended.
- Eating a healthy diet with enough calcium is important for strong bones. If needed, a doctor might suggest calcium supplements or recommend seeing a dietitian for advice.
- Staying active is crucial for bone health and overall strength. However, Paget’s disease can weaken bones, so not all exercises are safe. A physiotherapist or occupational therapist can guide patients on safe and effective exercises.
How to observe Paget’s Awareness Day
Wear blue
Royal blue is the official color for observing Paget’s Disease Day. Supporters can wear blue to help spread the word. If someone asks about your outfit, explain why you’re wearing it and share information about the disease.
Run for Paget’s
The Paget’s Association encourages supporters to promote awareness while staying active. To show your support, consider signing up for a local 5k and wearing royal blue. These events help raise awareness for the fight to find a cure for Paget’s Disease.
Spread the word
Many people don’t realize that Paget’s Disease isn’t as rare as it might seem, and not everyone with the disease shows symptoms. On January 11th, take a moment to talk about Paget’s Disease with someone you know. You might even discover someone who has been personally affected.
FAQs
How do doctors detect Paget’s disease?
Paget’s disease is often diagnosed through a few key tests. Doctors commonly use X-rays to spot changes in the bones. A blood test may also be done to check for high levels of alkaline phosphatase, an enzyme linked to the condition. In some cases, a bone scan helps pinpoint which bones are affected.
Can Paget’s be cured?
Paget’s disease of bone has no cure, but treatments are available to ease symptoms. For those without symptoms, doctors may recommend monitoring the condition and starting treatment only if issues develop.
What does Paget’s disease pain feel like?
Paget’s disease can lead to pain in the affected bone and nearby joints. The bone pain is often described as a dull, aching sensation that feels deep within the impacted area.
Can you live a long life with Paget’s disease?
People who develop Paget’s disease of the bone have a better outlook when it is caught and treated early. Early treatment can help prevent complications like arthritis, bone fractures, or hearing loss.
