Contents:
- Medical Video: Living with Rett Syndrome | Cincinnati Children's
- What is Rett syndrome?
- Rett Syndrome attacks girls
- Symptoms of Rett syndrome seen in children
- What are the causes of Rett syndrome?
- How to diagnose Rett syndrome
- Treatment for Rett syndrome
- Alternative medicine for Rett syndrome
Medical Video: Living with Rett Syndrome | Cincinnati Children's
In 2015 ago, a small child from London named Rhea Kara raised funds by donating his paintings to help his classmates who had Rett syndrome. Rhea felt sorry to see her friend who was having trouble moving her body, and Rhea wanted to do something about this friend. The results of his charity, Rhea managed to surpass the target he set and received an award from the then British Prime Minister, David Cameron. Actually, what is Rett syndrome?
What is Rett syndrome?
Rett syndrome is a rare disease, which is a brain disorder that occurs in women. Usually, this disease is detected when the child is one or two years old. Usually, parents or caregivers of children with Rett syndrome are rather overwhelmed to take care of their children. Indeed, there is no treatment that can cure this disease. However, early diagnosis and treatment can help this girl and her family to overcome this syndrome.
Formerly, Rett syndrome was classified as autism. However, once scientists discover the cause of Rett (a type of mutation), this disease is classified as a neurological disorder that has a known cause. In other words, if a child has Rett syndrome accompanied by symptoms of autism, that child means having an abnormality autism spectrum disorder (ASD).
Most girls with Rett syndrome can survive at least in their middle ages. Researchers are still following the development of women with this disease, because this disease has only been identified in the last 20 years.
The condition of people with Rett syndrome usually does not improve over time, although it can be alleviated by a variety of therapies. This disease is a disease that will suffer forever by sufferers. Sometimes, the condition of a person with Rett syndrome may worsen but in a very slow tempo, or it can also remain stable.
Rett Syndrome attacks girls
Rett syndrome is a genetic disorder that almost always attacks girls. This disease is very rare, only one in 10,000 to 15,000 girls are affected by this condition.
In general, children who develop Rett Syndrome initially appear to be normal. Only when the child is around 6 months to 18 months, the symptoms of mental changes and the child's social interaction begin to change.
Symptoms of Rett syndrome seen in children
Although not always detected, slow head growth is the first symptom of a child suffering from Rett Syndrome. Decreased muscle health can also be initial symptoms. After that, the child usually loses the way to use his hands properly. Usually, the child will squeeze and rub their hands together.
When the child starts to age 1 to 4 years, the ability to socialize and talk to the child will worsen. The child will stop talking and have extreme social fears, along with no desire to interact with other people.
Besides affecting the child's mental state, Rett syndrome also attacks muscles and coordination. The child will walk awkwardly or have a rigid road style. Girls who have Rett syndrome also have poor respiratory coordination.
What are the causes of Rett syndrome?
Most children who have Rett syndrome experience mutations in genes on the X chromosome. Until now, there have been no studies that show exactly what these genes do or what causes mutations in genes until this Rett syndrome occurs. Believed, a mutation in a gene can affect other genes that participate in the development of the child.
Although Rett syndrome is a genetic disorder, this disease is not a hereditary disease. This disease occurs because of a mutation in the child's DNA. There are no risk factors that have been identified as causing this disease, unless it usually attacks girls. Methods of preventing this disease have also not been found.
If this Rett syndrome occurs in men, usually the boy dies immediately after birth. This is because men only have one X chromosome (women have two X chromosomes), this disease becomes very serious and fatal for boys.
How to diagnose Rett syndrome
Rett syndrome can be diagnosed from the behavior of the girl herself. Parents can self-diagnose Rett syndrome initially, then discuss with the doctor about the disease the girl has. Genetic testing is one method for detecting this disease. About 80% of women with Rett syndrome are diagnosed from genetic testing. Genetic testing can also predict how severe Rett syndrome is in the child.
Treatment for Rett syndrome
Treatment available for Rett syndrome is focused on helping the girl live as well as possible with the conditions she experiences. For example, physical therapy to help move, talk therapy to help deal with the problems the child is talking about, therapy to help the child carry out daily activities (such as bathing and dressing) without the help of others.
Experts believe that these therapies can help the child with Rett syndrome with their parents live normally. Although a truly normal life may not occur, progress from the child's condition is very possible.
There are also drugs that help with movement problems in children with Rett syndrome. Medications can also help control attacks. However, unfortunately, there is no cure for Rett syndrome.
Alternative medicine for Rett syndrome
Here is a list of additional therapies for children with Rett syndrome:
- Music therapy
- Hydrotherapy, a therapy that involves swimming or moving in water
- Therapy assisted by animals, for example therapy by riding a horse
Although there is no concrete evidence about these therapies being effective or not, parents who have applied this therapy report good development experienced by their children.
However, it is still advisable if parents want to apply this alternative treatment to their children, talk first to the doctor or therapist about the benefits and risks, and how this treatment can be in accordance with the planned medical treatment.
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