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Which advice would you give to someone who has just been diagnosed with Arthrogryposis?

See some advice from people with experience in Arthrogryposis to people who have just been diagnosed with Arthrogryposis

Arthrogryposis advice

Advice for Someone Diagnosed with Arthrogryposis


Receiving a diagnosis of Arthrogryposis can be overwhelming and raise many questions about what lies ahead. While each individual's experience with Arthrogryposis is unique, there are some general pieces of advice that can help you navigate this condition and live a fulfilling life. Here are some key points to consider:



1. Educate Yourself


Knowledge is power, so take the time to learn about Arthrogryposis. Understand the causes, symptoms, and potential complications associated with the condition. Research available treatment options, therapies, and assistive devices that can enhance your quality of life. Stay informed about the latest advancements in medical research and technologies that may benefit you.



2. Build a Support Network


Surround yourself with a strong support system. Connect with other individuals who have Arthrogryposis through support groups, online forums, or local communities. Sharing experiences, challenges, and triumphs with others who understand can provide immense emotional support and valuable insights. Additionally, involve your family, friends, and healthcare professionals in your journey to ensure you have a robust support network.



3. Seek Specialized Medical Care


Consult with medical professionals who specialize in Arthrogryposis. They can provide accurate diagnoses, develop personalized treatment plans, and offer guidance on managing the condition. Regular check-ups and ongoing communication with your healthcare team are crucial to monitor your progress, address any concerns, and adapt your treatment as needed.



4. Embrace Physical and Occupational Therapy


Physical and occupational therapy play a vital role in managing Arthrogryposis. These therapies aim to improve mobility, strength, and independence. Work closely with your therapists to develop a tailored exercise program that focuses on stretching, strengthening, and functional activities. Consistency and dedication to therapy exercises can lead to significant improvements in your daily life.



5. Explore Assistive Devices and Adaptive Technologies


Various assistive devices and adaptive technologies can enhance your independence and improve your ability to perform daily activities. These may include mobility aids, orthotic devices, adaptive utensils, and computer accessibility tools. Collaborate with occupational therapists and assistive technology specialists to identify the most suitable devices and technologies for your specific needs.



6. Prioritize Mental and Emotional Well-being


Living with Arthrogryposis can present emotional challenges. It is essential to prioritize your mental and emotional well-being. Seek counseling or therapy if needed, as professionals can help you develop coping strategies and provide emotional support. Engage in activities that bring you joy, practice self-care, and maintain a positive mindset. Remember, your mental health is just as important as your physical health.



7. Advocate for Yourself


Become your own advocate and actively participate in decisions regarding your healthcare, education, and overall well-being. Learn about your rights, available resources, and support services. Communicate your needs clearly to healthcare providers, educators, and employers. By advocating for yourself, you can ensure that your voice is heard and your needs are met.



8. Stay Positive and Embrace Life


Arthrogryposis may present challenges, but it does not define you. Stay positive, maintain a hopeful outlook, and celebrate your achievements, no matter how small they may seem. Surround yourself with positivity, engage in activities you enjoy, and pursue your passions. Remember that you are capable of leading a fulfilling and meaningful life, despite the obstacles you may face.



Conclusion


Receiving a diagnosis of Arthrogryposis can be overwhelming, but with the right mindset, support, and resources, you can navigate this condition successfully. Educate yourself, build a strong support network, seek specialized medical care, embrace therapy and assistive devices, prioritize your mental well-being, advocate for yourself, and maintain a positive outlook. Remember, you are not alone in this journey, and there is a wealth of support available to help you live a fulfilling life.


Diseasemaps
3 answers
If I see someone who has Arthrogryposis as a baby, I will give an advice to their parents, it is okay to have AMC. He or she will be just fine and he or she will overcome the obstacles. First ten years will be hard espically for the infants since they will go to surgeries, bracing, and therapy. As an adult with Arthogryposis, I overcame obstacles by finishing college as age of 30. I went through surgeries like 10-15 of them and therapy and brace fitted. Today I am healthy adult disabled person who walk and run around with my nephews!

Posted Jun 21, 2017 by Jessica 250
great advice from jessica. I am 48 and a survivor! I have two children and have a college education. Be your best advocate is my advice and look beyond what one doctor will tell you. I underwent countless surgeries and years of physical therapy when doctors told my parents not to expect much. There is always proof of miracles out there so don't be jaded by one doctor's medical opinion. Encourage your child and never give up on your child. Your child is special. Did you know that those with AMC have a higher percentage of degrees than the general population? AMC kids overcome obstacles and thrive as adults usually. Don't be discouraged. If you're not discouraged then your child won't be either. Learn as much as you can about the syndrome and it is absolutely worth multiple visits to places like Shriners and teaching hospitals affiliated with Universities. Dont give up!

Posted Oct 28, 2017 by Lisa 600

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