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Which advice would you give to someone who has just been diagnosed with Parry-Romberg syndrome / Progressive hemifacial atrophy?

See some advice from people with experience in Parry-Romberg syndrome / Progressive hemifacial atrophy to people who have just been diagnosed with Parry-Romberg syndrome / Progressive hemifacial atrophy

Parry-Romberg syndrome / Progressive hemifacial atrophy advice

Advice for Coping with Parry-Romberg Syndrome / Progressive Hemifacial Atrophy


Receiving a diagnosis of Parry-Romberg syndrome or Progressive Hemifacial Atrophy can be overwhelming and bring about a range of emotions. It is important to remember that you are not alone in this journey. While there is currently no cure for this rare condition, there are various strategies and support systems that can help you manage the physical, emotional, and social challenges that may arise. Here are some pieces of advice to consider:



1. Seek Medical Guidance


Consult with a healthcare professional who specializes in Parry-Romberg syndrome or related conditions. They can provide you with accurate information about the condition, potential treatment options, and help you develop a personalized management plan.



2. Educate Yourself


Take the time to learn about Parry-Romberg syndrome and its symptoms. Understanding the condition can empower you to make informed decisions about your healthcare and communicate effectively with your medical team. Reliable sources such as medical journals, reputable websites, and patient support organizations can provide valuable information.



3. Connect with Support Groups


Joining support groups or online communities specifically for individuals with Parry-Romberg syndrome can be immensely beneficial. Connecting with others who share similar experiences can provide emotional support, practical advice, and a sense of belonging. These communities can also be a valuable source of information about coping strategies and available resources.



4. Develop a Support Network


Reach out to your family, friends, and loved ones for support. Sharing your feelings and experiences with trusted individuals can help alleviate the emotional burden that may accompany the condition. Their understanding and encouragement can make a significant difference in your overall well-being.



5. Practice Self-Care


Engage in activities that promote your physical and mental well-being. Regular exercise, a balanced diet, and sufficient sleep can contribute to your overall health. Additionally, consider incorporating stress-reducing techniques such as meditation, deep breathing exercises, or pursuing hobbies that bring you joy and relaxation.



6. Explore Treatment Options


While there is no cure for Parry-Romberg syndrome, there are treatments available to manage specific symptoms. Discuss potential treatment options with your healthcare provider, which may include medications, reconstructive surgery, or cosmetic procedures. Each individual's treatment plan will vary based on their specific needs and goals.



7. Manage Emotional Well-being


Living with a visible condition like Parry-Romberg syndrome can impact your self-esteem and body image. It is essential to prioritize your emotional well-being. Consider seeking therapy or counseling to help navigate the emotional challenges that may arise. Therapists can provide coping strategies, support, and guidance to help you build resilience and maintain a positive outlook.



8. Educate Others


Help raise awareness and understanding of Parry-Romberg syndrome by educating those around you. By sharing your experiences and knowledge, you can combat misconceptions and promote empathy and acceptance within your community.



9. Access Available Resources


Research and utilize resources that can assist you in managing the practical aspects of living with Parry-Romberg syndrome. This may include financial aid programs, disability accommodations, or assistive devices. Patient support organizations and healthcare professionals can guide you towards these resources.



10. Stay Positive and Embrace Your Uniqueness


Remember that your worth and identity extend far beyond your physical appearance. Embrace your uniqueness and focus on the qualities that make you who you are. Surround yourself with positive influences and engage in activities that bring you joy and fulfillment.



While Parry-Romberg syndrome may present challenges, it does not define you. By seeking support, staying informed, and taking care of your overall well-being, you can navigate this journey with resilience and lead a fulfilling life.


Diseasemaps
3 answers
I would first say find a great doctor that will listen and researcher.

Posted Mar 4, 2017 by Hannah 1050
First, I'd give you a hug and say this sucks, I know. Hang in there. Life can still be good even if you hate looking in the mirror or seeing yourself in pictures. And let yourself be photographed. What your friends and loved ones see in pictures is the same image as what they see in real life. It's only shocking to us because what we see in a picture is the opposite image of what we see in our mirror every day.
And then I'd urge you to seek treatment. Dr. John Siebert at the University of Wisconsin in Madison (USA) is a world renowned expert. He's the head of Microvascular Plastic/Reconstruction Surgery. He's done over 140 Reconstruction surgeries on PRS patients. His experience is that, even when the disease is active, putting healthy tissue in the diseased site actually stops the progression. Waiting till the PRS aquiesses--as some doctors advocate--is fruitless. Fat injections are also ineffective as it all just gets reabsorbed.

Posted Mar 4, 2017 by Barbara 1000

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My first symptoms showed up at about 4 or 5. Alopecia and skin discoloration. Slowly it progressed and at about 10 My parents began the search. I was officially diagnosed at 12 by doctors at UCLA. I was then sent to UCSF and went through several team...

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