Cure S.M.A- get the government to fund research!
- par: Danielle Maycox
- destinataire: 1000
This petition is to hopefully get the government to fund research into finding a cure/treatment for the No.1 genetic killer of children under two, yes that's right the No.1 genetic killer of children under two!
Spinal Muscular Atrophy (SMA) is a neuromuscular condition which causes severe weakness of the muscles. There are many types of SMA including type 1, 2, 3 and adult onset SMA. Depending on which type of SMA a person has will determine how severely they are affected by it. The earlier a person is diagnosed with SMA the more severe there condition will be. Most people have not even heard of SMA yet it is the number 1 genetic killer of children under 2 years old! Just as shockingly, 1 in 40 people carry the gene which causes SMA and they dont even know about it!
SMA type 1 is the most severe type and is usually fatal. Babies born with type 1 SMA are usually diagnosed around 6 months old. These babies often start to show symptoms of SMA within a few weeks after being born and sometimes the mother may notice that during the last few weeks/days of pregnancy that the baby isn't as active and moves around less. SMA affects the voluntary muscles, which includes most of the body's muscles so a baby with SMA will not reach milestones which other babies the same age will be reaching, this includes: rolling over, crawling, sitting unsupported, holding up their head and moving their arms and legs. Babies with SMA are "floppy" and feel limp due to the weakness of their muscles. However, babies with SMA are not atall affected mentally and they are usually very bright and alert! As the SMA progresses, babies with SMA lose the ability to suck and it becomes dangerous for them to feed because they are likely to choke so they eventually need to be tube fed. They can also choke on their own saliva so they have to have suction which isn't very nice and each time they get a cold it is life threatening and they usually end up in hospital with pneumonia which is usually fatal for them because the weakness also affects there lungs, meaning that they find it hard to breathe and impossible to cough! The life expectancy of a baby with SMA type 1 is just one year old!
SMA type 2 affects each person differently and each person will be stronger or weaker than another. People with SMA type 2 are usually diagnosed at around the age of 18 months but this can vary. Children with this type of SMA don't usually start to show signs of the condition until they are around 12 months old. The parents may notice that the child is losing the ability to do some things which they used to be able to do. For example, a child with SMA type 2 may start to crawl, roll over and walk but then slowly they find these activities more and more difficult to do until they can no longer do them. All children with SMA type 2 will eventually use an electric wheelchair and will rely on their parents or carers to help them with daily activities such as dressing, toileting etc. Children with SMA type 2 can usually have a normal diet, however some children may need to be tube fed because the muscles used for swallowing may be affected. The respiratory muscles are also usually affected to some extent because the SMA makes them more prone to chest infections and because the lungs are weak they cannot cough properly and a chest infection can quickly turn into pneumonia. Children with SMA type 2 also usually develop scoliosis (curvature of the spine) which can compromise the lungs even more, so lots of surgeries are done to fuse the spine into a straight position. With the correct medical care, chest care and management children with SMA type 2 can usually live well into adulthood.
SMA type 3 is the mildest form of child onset SMA and the effects of it vary from child to child. Children with SMA type 3 usually have difficulty walking up stairs, standing up from a sitting position and balance can be affected. It is important that children with this type of SMA do regular light exercise to try to maintain the muscle strength that they already have and it is important that they try to follow a healthy lifestyle. Life expectancy is normal.
Adult onset SMA ffects each person differently, depending on which muscles are affected such as the ones closest to the body (upper arms and thighs) or the ones furthest away from the body (lower legs, hands and feet). Adult SMA, like childrens SMA doesn't usually cause any pain, but they can sometimes feel like their muscles are heavy, tired, tingling and also cramp. Life expectancy is normal.
If the government could fund research into a cure or treatment for SMA then many young lives would be saved, babies with type one SMA are dying from this condition everyday, they are healthy, bright children trapped in a body that doesn't work. I myself have type 2 SMA and when i was diagnosed i wasn't expected to reach my teenage years and i am now 18 and doing well. Researchers have been looking into stem-cell treatment and they believe that this could be the answer we are waiting for, however most of this research is taking place in other countries and not as much here in the UK. If SMA was cured then a lot of other neuromuscular diseases would also be cured!
If you agree that the UK government should fund research into a cure or treatment for SMA then please sign the petition!
signersignerSpinal Muscular Atrophy (SMA) is a neuromuscular condition which causes severe weakness of the muscles. There are many types of SMA including type 1, 2, 3 and adult onset SMA. Depending on which type of SMA a person has will determine how severely they are affected by it. The earlier a person is diagnosed with SMA the more severe there condition will be. Most people have not even heard of SMA yet it is the number 1 genetic killer of children under 2 years old! Just as shockingly, 1 in 40 people carry the gene which causes SMA and they dont even know about it!
SMA type 1 is the most severe type and is usually fatal. Babies born with type 1 SMA are usually diagnosed around 6 months old. These babies often start to show symptoms of SMA within a few weeks after being born and sometimes the mother may notice that during the last few weeks/days of pregnancy that the baby isn't as active and moves around less. SMA affects the voluntary muscles, which includes most of the body's muscles so a baby with SMA will not reach milestones which other babies the same age will be reaching, this includes: rolling over, crawling, sitting unsupported, holding up their head and moving their arms and legs. Babies with SMA are "floppy" and feel limp due to the weakness of their muscles. However, babies with SMA are not atall affected mentally and they are usually very bright and alert! As the SMA progresses, babies with SMA lose the ability to suck and it becomes dangerous for them to feed because they are likely to choke so they eventually need to be tube fed. They can also choke on their own saliva so they have to have suction which isn't very nice and each time they get a cold it is life threatening and they usually end up in hospital with pneumonia which is usually fatal for them because the weakness also affects there lungs, meaning that they find it hard to breathe and impossible to cough! The life expectancy of a baby with SMA type 1 is just one year old!
SMA type 2 affects each person differently and each person will be stronger or weaker than another. People with SMA type 2 are usually diagnosed at around the age of 18 months but this can vary. Children with this type of SMA don't usually start to show signs of the condition until they are around 12 months old. The parents may notice that the child is losing the ability to do some things which they used to be able to do. For example, a child with SMA type 2 may start to crawl, roll over and walk but then slowly they find these activities more and more difficult to do until they can no longer do them. All children with SMA type 2 will eventually use an electric wheelchair and will rely on their parents or carers to help them with daily activities such as dressing, toileting etc. Children with SMA type 2 can usually have a normal diet, however some children may need to be tube fed because the muscles used for swallowing may be affected. The respiratory muscles are also usually affected to some extent because the SMA makes them more prone to chest infections and because the lungs are weak they cannot cough properly and a chest infection can quickly turn into pneumonia. Children with SMA type 2 also usually develop scoliosis (curvature of the spine) which can compromise the lungs even more, so lots of surgeries are done to fuse the spine into a straight position. With the correct medical care, chest care and management children with SMA type 2 can usually live well into adulthood.
SMA type 3 is the mildest form of child onset SMA and the effects of it vary from child to child. Children with SMA type 3 usually have difficulty walking up stairs, standing up from a sitting position and balance can be affected. It is important that children with this type of SMA do regular light exercise to try to maintain the muscle strength that they already have and it is important that they try to follow a healthy lifestyle. Life expectancy is normal.
Adult onset SMA ffects each person differently, depending on which muscles are affected such as the ones closest to the body (upper arms and thighs) or the ones furthest away from the body (lower legs, hands and feet). Adult SMA, like childrens SMA doesn't usually cause any pain, but they can sometimes feel like their muscles are heavy, tired, tingling and also cramp. Life expectancy is normal.
If the government could fund research into a cure or treatment for SMA then many young lives would be saved, babies with type one SMA are dying from this condition everyday, they are healthy, bright children trapped in a body that doesn't work. I myself have type 2 SMA and when i was diagnosed i wasn't expected to reach my teenage years and i am now 18 and doing well. Researchers have been looking into stem-cell treatment and they believe that this could be the answer we are waiting for, however most of this research is taking place in other countries and not as much here in the UK. If SMA was cured then a lot of other neuromuscular diseases would also be cured!
If you agree that the UK government should fund research into a cure or treatment for SMA then please sign the petition!
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