You're Not Alone: Navigating the Maze of Rare Diseases

Have you ever felt like you're lost in a confusing maze? That's a feeling many people with rare diseases share. Getting an accurate diagnosis and finding the right treatment can seem like an endless journey. But the good news is, you're not alone. Healthcare providers such as physical therapists are here to guide you through this labyrinth, and there are steps you can take to become an active participant in your own care.

Understanding Rare Diseases

• What are they? A rare disease is any condition that affects fewer than 200,000 people in the United States. While each disease is uncommon, there are over 7,000 recognized rare diseases, affecting millions of people worldwide.
• Who is affected? An estimated 25-30 million Americans live with a rare disease. That's a significant number, and it means there's a whole community of people who understand the challenges you face.

Challenges You Might Encounter

• Delayed Diagnosis and Misdiagnosis: The road to diagnosis can be long and frustrating. It may take years to get a correct answer, and sometimes you might receive an incorrect diagnosis first. This can delay getting the treatment you need.
• Finding Providers Who Understand: It's perfectly understandable that healthcare providers like physical therapists can't be experts in every single disease. But sometimes that can lead to a feeling that they don't quite understand what you're going through. You might also experience unclear communication about your treatment options.
• Limited Access to Specialized Care: Experts in rare diseases are often located in academic medical centers, which tend to be in urban areas. If you live in a more rural area, this can make it difficult to see a specialist and get the care you deserve.

How You Can Take Charge of Your Care

• Work with Your Care Team for a Holistic Approach: A comprehensive assessment is important. This means providing your doctor with a detailed medical history, including your family history. Rare diseases can sometimes present later in life, so letting your doctor know your full medical picture is crucial.
• Advocate for Yourself: Don't be afraid to ask questions and express your concerns. You are the expert on your own body and experiences. The more information you share with your care team, the better they can understand your needs.
• Build a Support Network: There are many resources available to help you on your journey. Look for patient support groups or advocacy organizations for your specific disease. These groups connect you with others who understand what you're going through and can offer invaluable advice and support.

How Physical Therapy Can Help

Many people with rare diseases experience physical limitations, pain, or difficulty with daily activities. A physical therapist can be a valuable member of your healthcare team. Physical therapists are experts in movement and function, and they can create a personalized plan to help you:

• Improve your strength and flexibility
• Reduce pain and stiffness
• Increase your balance and coordination
• Learn techniques to manage your symptoms
• Stay active and independent

In many cases, getting moving can be a powerful tool in managing a rare disease. Exercise can help improve your overall health and well-being, and it can even boost your mood and energy levels.

Take Charge of Your Health Today!

If you're living with a rare disease, don't hesitate to explore all the resources available to you. Talking to a physical therapist at Agape Physical Therapy can be a great first step. Our team of experienced professionals can work with you to develop a safe and effective exercise program that meets your individual needs and helps you live a more fulfilling life. We have aquatic therapy at 4 locations and anti-gravity treadmills at all our locations which can help you move more freely in a less stressful environment. Call Agape Physical Therapy today to schedule an appointment and take charge of your health!