My daughter of 11 months ,suffering from marfans syndro me,her hight is same as 2 year baby,joints are not str?!
Question: My daughter of 11 months ,suffering from marfans syndro me,her hight is same as 2 year baby,joints are not str.?
my daughter of 11 months ,suffering from marfans syndrome,her hight is same as 2 year baby,joints are not strong, chest is like bird,long finger,she has vision no of -4.5 blood tests are Ig A-79,Ig G-360,Ig M-152.
IS IT ANY SERIOUS .? WHAT IS THE TREATMENT.?
Health Question & Answer
IS IT ANY SERIOUS .? WHAT IS THE TREATMENT.?
Health Question & Answer
Answers:
Hi Stephanie,
I am not a doctor, but I do have Marfan's Syndrome! Your daughter sounds like she has many of the classic physical symptoms of the disorder. I'd like to say right away....don't panic! There is no cure for Marfan Syndrome, but knowing a person has it is more than half the battle. When a person knows they have it and they get regular check ups and treatment, they greatly increase their chances of living a full and happy life.
Marfan Syndrome is a connective tissue disorder. In the most simple terms, it means that there is not enough fibrilin in the body. Think of fibrilin as the "glue" that holds the body together and makes tissues strong. When you don't have enough of it, your tissues are weak. You may have loose joints because of it. The most dangerous symptom of Marfan Syndrome is the weak aorta; the major artery that carries blood out of your heart and away to the rest of the body. Because there is not enough "glue" to make the aorta strong, it can dilate and balloon out. Eventually it can rupture and cause instant death. It is a serious complication and it cannot be ignored. The good news is that if you see a cardiologist regularly, they can monitor the aorta's growth and intervene before it gets to a dangerous size. Your daughter might need heart surgery, but I tell you from first hand experience...doctors have mastered this procedure! It is very safe. People who don't get the life-saving surgery havea life expectency of about 30 years. People who do get the surgery can live to about 75 or more! HUGE difference. The risks involved in having the surgery on the aorta are minimal and it is well worth it.
Please, visit the National Marfan Foundation's website at www.marfan.org for more info. It is really helpful and has a lot of good information. There is also a list of support groups, so you could find one in your area.
also feel free to write to me if you are worried. I'd like to say, though, I am a good example of what happens to a Marfan patient when they take care of themselves and get regular screening. I was diagnosed as a child and have been screened once or twice a year all my life. I have had heart surgery to correct my aortic issues. I see my eye doctor regularly to make sure I am doing the best I can for my vision. I am now 29 years old, I have a college degree. I have worked as an interior designer and am now going back to school for a degree in the medical field. I am healthy and happy and owe my life to my parents who always made sure I had good medical treatment and to my talented doctors. Having Marfan Syndrome is an adjustment, but I live quite normally. Life is good! Your daughter will be just fine as long as you are diligent about her medical care. Don't shy away from it out of fear. Medical treatment and surgery is far less frightening than the alternative...
Good luck, my dear! Write any time.
KellyHealth Question & Answer
I am not a doctor, but I do have Marfan's Syndrome! Your daughter sounds like she has many of the classic physical symptoms of the disorder. I'd like to say right away....don't panic! There is no cure for Marfan Syndrome, but knowing a person has it is more than half the battle. When a person knows they have it and they get regular check ups and treatment, they greatly increase their chances of living a full and happy life.
Marfan Syndrome is a connective tissue disorder. In the most simple terms, it means that there is not enough fibrilin in the body. Think of fibrilin as the "glue" that holds the body together and makes tissues strong. When you don't have enough of it, your tissues are weak. You may have loose joints because of it. The most dangerous symptom of Marfan Syndrome is the weak aorta; the major artery that carries blood out of your heart and away to the rest of the body. Because there is not enough "glue" to make the aorta strong, it can dilate and balloon out. Eventually it can rupture and cause instant death. It is a serious complication and it cannot be ignored. The good news is that if you see a cardiologist regularly, they can monitor the aorta's growth and intervene before it gets to a dangerous size. Your daughter might need heart surgery, but I tell you from first hand experience...doctors have mastered this procedure! It is very safe. People who don't get the life-saving surgery havea life expectency of about 30 years. People who do get the surgery can live to about 75 or more! HUGE difference. The risks involved in having the surgery on the aorta are minimal and it is well worth it.
Please, visit the National Marfan Foundation's website at www.marfan.org for more info. It is really helpful and has a lot of good information. There is also a list of support groups, so you could find one in your area.
also feel free to write to me if you are worried. I'd like to say, though, I am a good example of what happens to a Marfan patient when they take care of themselves and get regular screening. I was diagnosed as a child and have been screened once or twice a year all my life. I have had heart surgery to correct my aortic issues. I see my eye doctor regularly to make sure I am doing the best I can for my vision. I am now 29 years old, I have a college degree. I have worked as an interior designer and am now going back to school for a degree in the medical field. I am healthy and happy and owe my life to my parents who always made sure I had good medical treatment and to my talented doctors. Having Marfan Syndrome is an adjustment, but I live quite normally. Life is good! Your daughter will be just fine as long as you are diligent about her medical care. Don't shy away from it out of fear. Medical treatment and surgery is far less frightening than the alternative...
Good luck, my dear! Write any time.
KellyHealth Question & Answer
Any disease to a human being is from the negativities that is catched to one of the 7 main energy centres present in the human body.
If one is able to take the divine energy present in the sacrum bone through the said 7 energy centres, then one can feel energy centres in hands and the negativities to the energy centres can be taken out through simple techniques. These techniques are result oriented and act fast in children.
To set right the problem to your baby, give her realisation through Sahajayoga and make her a healthy baby. This can also be practiced by adults. It is free of charge.
To know more about it please log on to www.sahajayoga.org.Health Question & Answer
If one is able to take the divine energy present in the sacrum bone through the said 7 energy centres, then one can feel energy centres in hands and the negativities to the energy centres can be taken out through simple techniques. These techniques are result oriented and act fast in children.
To set right the problem to your baby, give her realisation through Sahajayoga and make her a healthy baby. This can also be practiced by adults. It is free of charge.
To know more about it please log on to www.sahajayoga.org.Health Question & Answer