 BDSRA
Siblings' Page What is a Sibling? What is a Sibling?A sibling is a brother or sister, half-brother or half-sister, or step-brother
or step-sister of a person affected with Batten Disease. What is Batten Disease?Batten Disease was first described 170 years ago by a British Pediatrician. It's scientific name is neuronal ceroid lipofuscinosis and it is one of the more common neurodegenerative diseases. At this time, it is not preventable. There are four basic forms of Batten Disease: Infantile, Late Infantile, Juvenile and Adult. They are distinguished usually by age of onset. Batten Disease is rarely diagnosed immediately. It is often mistaken for epilepsy, mental retardation or retinitis pigmentosa. This disease affects the brain and central nervous system and often begins with slow loss of vision and seizures, personality and behavior changes and always progresses through mental and physical deterioration to death. Batten Disease is an inherited disease. It often strikes more than one
person in a family that carries the mutated/defective gene. A person must
have received two such genes (one from each parent) in order to develop
Batten Disease. A person with only one such gene will not develop the disease,
but is a carrier. If two such carriers have children, there is a 25% chance
that both will pass the defective gene to a child, who would therefore
develop the disease. What does it mean to be the sibling of a person with Batten Disease?Being the sibling of a person with Batten Disease means that your brother or sister has a serious illness and your life will be affected in many different and sometimes unpleasant ways. Like your parents, you will have to learn to cope with different and often extreme emotions or feelings. You must learn to deal with the grief process just as your parent will, but because of your age, the process can be different. Because you are part of the family, you will be expected to share some of the load of caring for your brother or sister. There are some important things that you as the sibling need to understand.
Batten Disease is not contagious like a cold or the flu. You did not do
anything that caused your sibling to have this illness, so don't blame
yourself. You can do many things that will make your brother or sister's
life better, and yours too! What is going to happen to my brother or sister?As the disease progresses your brother or sister will develop seizures,
which can become difficult to control, lose his/her vision and the ability
to walk, talk and eat. You will see him/her start a decline in understanding,
almost as if he/she is "unlearning" many things. This is called
REGRESSION. Emotions, including temper
and understanding, will become difficult to control. There may even be
hallucinations (seeing things that aren't there). What can I do?Learn all you can from your parents, doctors, nurses and others who
have an understanding of the illness. ASK QUESTIONS.
Your patience with your sibling is important, too! How will this affect me?Friends may avoid you and your brother/sister because they don't understand what is happening, but you can help them learn and perhaps your friendships will grow stronger. You may not be able to do all the things that you want to do or even when you want to do them. Your brother/sister may at times seem to get preferential treatment and because he/she is ill, as time goes by he/she will need more and more attention and care. You may even be able to take an active part in caring for your brother/sister. The neat thing about all of this is that there are other siblings just
like you who are going through the same things as you. They are part of
the SIBLING GROUP and you can talk
to them about all kinds of thins, and learn from them, too! Sibling ProgramThe Sibling Program is an effort to afford sibs with information and support through a section of the quarterly newsletter Illuminator, area chapter meetings and telephone/mail contacts. Each year, BDSRA has a conference during which the sibs have a program of their own. This program includes meetings in which peers are able to talk to each other, share concerns and experiences and HAVE FUN! At one of the meeting, a doctor is available to answer questions about
the disease. They also have group activities, such as going to amusement
parks, picnics, swimming and other fun things. The conference offers sibs
the opportunity to be with peers who understand what you are going through.
Best of all, you will be able to have contact with other sibs all year,
which can be very important to you. Ok, so how do I join the Sibling Group?The fact that your brother or sister has Batten Disease puts you into
the Sibs Group. You can begin interacting with other sibs by attending
an area chapter meeting, the Annual Conference or by calling one of the
SIBS GROUP leaders.
Their names and numbers are located below. What about the future?Researchers have recently identified the genes for the Finnish Infantile and Juvenile Batten Disease. The genes for other forms of Batten Disease will be identified as time goes by. This means that you, as a sibling of a person affected with Batten Disease, will be able to have a test to see if you are a carrier of the gene. You can talk to your parents about "carrier testing". Researchers continue to work to find the answers to Batten Disease,
and everyone hopes that there will be a treatment and cure someday soon. Sibling program leaders
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