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Living with Russell Silver Syndrome. How to live with Russell Silver Syndrome?

Can you be happy living with Russell Silver Syndrome? What do you have to do to be happy with Russell Silver Syndrome? Living with Russell Silver Syndrome can be difficult, but you have to fight to try to be happy. Have a look at things that other people have done to be happy with Russell Silver Syndrome

Living with Russell Silver Syndrome

Russell Silver Syndrome (RSS) is a rare genetic disorder characterized by growth retardation and various physical and developmental abnormalities. Living with Russell Silver Syndrome can present unique challenges, but with proper understanding, support, and management, individuals with RSS can lead fulfilling lives.



Medical Management


It is crucial for individuals with Russell Silver Syndrome to receive regular medical care and monitoring. This includes frequent check-ups with healthcare professionals who specialize in RSS. They can help manage the specific medical issues associated with the syndrome, such as growth hormone deficiency, feeding difficulties, and skeletal abnormalities.



Emotional Support


Living with a rare condition like Russell Silver Syndrome can sometimes be emotionally challenging. It is important to have a strong support system in place, including family, friends, and support groups. Connecting with others who have RSS can provide a sense of belonging and understanding.



Education and Development


Children with Russell Silver Syndrome may require additional support in their education and development. It is essential to work closely with teachers, therapists, and educational specialists to create an individualized plan that addresses their unique needs. Early intervention programs can be beneficial in promoting optimal growth and development.



Nutrition and Feeding


Feeding difficulties are common in individuals with Russell Silver Syndrome, especially during infancy and early childhood. Working with a registered dietitian or nutritionist can help ensure appropriate nutrition and address any specific dietary requirements. Regular monitoring of growth and weight is essential to track progress.



Physical Therapy and Rehabilitation


Physical therapy and rehabilitation can play a significant role in managing the physical challenges associated with Russell Silver Syndrome. These therapies can help improve muscle strength, coordination, and mobility. Working with a qualified therapist can enhance overall physical well-being and independence.



Psychological Support


Psychological support is crucial for individuals with Russell Silver Syndrome and their families. Counseling or therapy can help address any emotional or psychological difficulties that may arise. It can also provide coping strategies and promote resilience.



Advocacy and Awareness


Advocacy and raising awareness about Russell Silver Syndrome are important for fostering understanding and support within the community. Participating in support groups, sharing personal experiences, and engaging in awareness campaigns can help educate others and promote inclusivity.



Living with Russell Silver Syndrome requires a multidisciplinary approach, involving medical care, emotional support, education, and therapy. With the right resources and support, individuals with RSS can thrive and lead fulfilling lives.


Diseasemaps
3 answers
Surround yourself with happy, loving and supportive people :)
Do the things you love, and give everything a go.

Posted Aug 21, 2017 by Scarlett 2100
Translated from portuguese Improve translation
Local, mobile, adapted to dwarfism.

Posted Aug 21, 2017 by Debora Petry 1151

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Russell Silver Syndrome stories
My son was born in 2010. He was failing to thrive no matter how much i fed him. When he was 3 we finally had genetic testing done our doctor was actually looking for something else when they discovered mupd7.  Hes now 6 years old and is also auti...
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Our daughter Nancy Beatrice Nolan joined the world 3 weeks early on 19th August 2014, weighing in at 5lb 4.5oz.  In the weeks and months that followed Nancy failed to grow or gain weight as you would expect a baby would . She wasn’t taking much m...
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Jordan is 13 now, he was diagnosed at 3 by a geneticist at Yale. He's been on growth hormone for years. 
Russell Silver Syndrome stories
IZAIAH  MY SON IZAIAH WAS BORN IN DECEMBER 2013 HE WAS BORN WITH HLHS AND SHONES SYNDROME BUT HES HAD LOTS OF HEART SURGERY AND HASN'T BEEN TO WELL SO WE PUT HIM NOT GROWING DOWN TO THAT BUT THIS YEAR I ASKED ABOUT DWARFISM AND WE WENT TO SEE AN EN...

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Russell Silver Syndrome forum

RUSSELL SILVER SYNDROME FORUM
Russell Silver Syndrome forum
Hello I'm new here and have been searching for support with RSS I have never met anyone that has it and I've been very alone with this all my life 

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