0
I suffered terribly from this condition and almost died. I blew up like a purple Michelin man, my skin peeled 3 times, my feet cracked so terribly I could not walk for weeks.
I lived, I was told, because my skin peeled, but was also told that 85% of people that get this die.
I have had residual effects ever since, like feet neruoropthy and constant fuzzy fellings on the bottom of both feet. Also, I have not had any real restful sleep for many years. And I feel my central nervous has been affected. No one told me there would be any lasting effects. I just was lucky to live.
I was told that my condition was caused by a severe allergic reaction to VANCOMYCIN antibiotic that I administerd at home because of an open wound I had for 8 weeks following surgury for a mangled rotator cuff tendinitis.
Then I was put on Prednizone to counteract the Stephens Johnson Syndrome and not weened off of that properly and put back on, and then became a 3 30/70 humilin diabetic.
What a Horror story. Will I have residual effects from this forever?
-Ike
What else can I help you with?
Is smith-magenis syndrome curable?
Smith-Magenis syndrome is a genetic disorder that currently does not have a cure. Treatment focuses on managing symptoms and providing supportive care to improve quality of life for individuals with the syndrome. Research is ongoing to better understand the condition and develop potential therapies in the future.
What research is being done on marfan syndrome?
Research on Marfan syndrome includes studying the underlying genetic mutations, developing new treatments to manage symptoms, and improving diagnostic methods. Additionally, there is ongoing research to better understand the complications associated with Marfan syndrome and to find ways to prevent them. Clinical trials are also being conducted to evaluate potential therapies for this condition.
How is Shy-Drager syndrome prevented?
Shy-Drager syndrome (Multiple system atrophy) is a rare, progressive neurological disorder with no known prevention method at this time. Research is ongoing to better understand the underlying causes and potential preventive measures. Treatment typically focuses on managing symptoms and improving quality of life.
What is Pfieffer syndrome?
Pfeiffer syndrome is a rare genetic disorder characterized by abnormalities in the shape of the head and face, including early fusion of certain skull bones. This can lead to various physical and developmental challenges, such as hearing loss and cognitive impairments. Treatment typically involves a combination of surgical interventions and ongoing medical management to address the specific symptoms and complications associated with the syndrome.
Life expectancy of angelman syndrome?
Individuals with Angelman syndrome typically have a normal life expectancy, as the condition itself is not life-threatening. However, they may face challenges in terms of cognitive and physical development, as well as require ongoing support and care throughout their lives. Regular medical monitoring and interventions can help manage associated symptoms and improve quality of life.
Is smith-magenis syndrome curable?
Smith-Magenis syndrome is a genetic disorder that currently does not have a cure. Treatment focuses on managing symptoms and providing supportive care to improve quality of life for individuals with the syndrome. Research is ongoing to better understand the condition and develop potential therapies in the future.
Is scarcity an ongoing condition?
yes
What research is being done on marfan syndrome?
Research on Marfan syndrome includes studying the underlying genetic mutations, developing new treatments to manage symptoms, and improving diagnostic methods. Additionally, there is ongoing research to better understand the complications associated with Marfan syndrome and to find ways to prevent them. Clinical trials are also being conducted to evaluate potential therapies for this condition.
How is Shy-Drager syndrome prevented?
Shy-Drager syndrome (Multiple system atrophy) is a rare, progressive neurological disorder with no known prevention method at this time. Research is ongoing to better understand the underlying causes and potential preventive measures. Treatment typically focuses on managing symptoms and improving quality of life.
Is there a cure for Terrance syndrome?
As of now, there is no known cure for Tourettes syndrome. Treatment typically focuses on managing symptoms through behavioral therapy, medications, and support strategies. Many individuals with Tourette's can lead fulfilling lives, with symptoms often improving with age. Ongoing research aims to better understand the condition and develop more effective treatments.
What are the treatments for cri Du chat?
There are no treatments available for cri du chat syndrome. This is a genetic condition that requires ongoing support from a team made up of the parents, therapists, and medical professionals. Early intervention, physical and language therapy, helps children with cri du chat syndrome reach their fullest potential and lead full and meaningful lives.
What is Pfieffer syndrome?
Pfeiffer syndrome is a rare genetic disorder characterized by abnormalities in the shape of the head and face, including early fusion of certain skull bones. This can lead to various physical and developmental challenges, such as hearing loss and cognitive impairments. Treatment typically involves a combination of surgical interventions and ongoing medical management to address the specific symptoms and complications associated with the syndrome.
Is there any research being done on Marfan Syndrome?
Yes, there is ongoing research on Marfan syndrome, a genetic disorder that affects the body's connective tissue. Researchers are studying the underlying genetic mutations, developing new treatment options, and exploring ways to manage the symptoms and complications associated with the condition. Collaborative efforts between scientists, medical professionals, and advocacy groups aim to improve understanding and care for individuals with Marfan syndrome.
Life expectancy of angelman syndrome?
Individuals with Angelman syndrome typically have a normal life expectancy, as the condition itself is not life-threatening. However, they may face challenges in terms of cognitive and physical development, as well as require ongoing support and care throughout their lives. Regular medical monitoring and interventions can help manage associated symptoms and improve quality of life.
What alternative treatment can help patients with Gulf War Syndrome?
The key to working successfully with people living their lives with Gulf War syndrome is long-term, ongoing care, whether it be hypnotherapy, acupuncture, homeopathy, nutrition, vitamin/mineral therapy, or bodywork
What doctor specializes in cri du chat syndrome?
There are no treatments available for cri du chat syndrome. This is a genetic condition that requires ongoing support from a team made up of the parents, therapists, and medical professionals. Early intervention, physical and language therapy, helps children with cri du chat syndrome reach their fullest potential and lead full and meaningful lives.
How is the family of a person with marfan syndrome affected?
The family of a person with Marfan syndrome may experience emotional and psychological stress due to the challenges associated with the condition, such as health complications and the need for ongoing medical care. They may also face uncertainties regarding the genetic nature of the syndrome, as it can be inherited, prompting concerns about other family members being at risk. Additionally, families may need to adapt their lifestyles and support systems to accommodate the affected individual's needs. Overall, the impact can be significant, requiring education, awareness, and often, a strong support network.
