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Easy reader Neurofibromatosis, type 1 For adults Ågrenska 2013, 1 Produced by Ågrenska, financed by the Swedish Inheritance Fund Text and editing: Jan Engström, Gunilla Jaeger and AnnCatrin

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Easy reader Neurofibromatosis, type 1 For adults Ågrenska 2013, 1 Produced by Ågrenska, financed by the Swedish Inheritance Fund Text and editing: Jan Engström, Gunilla Jaeger and AnnCatrin Röjvik, Ågrenska in cooperation with Funka Nu and individuals with Neurofibromatosis, type 1 Medical facts expert: Barbro Westerberg, Queen Silvia Children s Hospital Layout and illustrations: Danaxel Lindberg, Box Information Translation: Linda Schenck, Artful AB Ågrenska 2013, 2 contents Neurofibromatosis, type 1 Neurofibromatosis, type 1...page 4 What is Neurofibromatosis, type 1?...page 5 Skin problems in NF...page 6 Vision problems...page 7 Learning difficulties...page 8 Motor activity How common is NF?...page 9 What causes NF? Can children inherit NF?...page 10 When can the doctors suspect that a child has NF? How is the diagnosis made?...page 11 Other symptoms Adults with NF should have regular medical checkups...page 12 Physical exercise...page 13 Dental care is important...page 14 Support and help in the community Interview Eva has NF...page 19 What is it like to be an adult with NF? What was your childhood like?...page 20 Do you have vocational training and a job?...page 21 What are things like today?...page 22 What are your wishes for the future? Ågrenska 2013, 3 Neurofibromatosis, type 1 People are alike and different. Everybody has some things that work well and some things that do not. In this information material, things that do not work so well are called symptoms. Some illnesses may include a number of symptoms. A group of symptoms, taken together, is known as a syndrome. Neurofibromatosis, type 1 (NF), is one example of an illness that includes a number of symptoms. It is good to have a name for the symptoms. Then the medical services can give you better treatment. You can also get help and support from your community. So says Doctor Barbro Westerberg and she knows lots about NF. Ågrenska 2013, 4 What is Neurofibromatosis, type 1? People with NF may have many different symptoms. Some people have a lot of symptoms. Others only have a few. It is unusual for one person to have all the known symptoms of NF. How severe the symptoms are also differs from one person to another. NF affects both the skin and the nerves. Here are the most common symptoms people with NF can have. In order to be diagnosed with NF the person must have at least two of these symptoms: A number of light brown skin spots (café-au-lait-spots) A large number of small bumps on the skin Growths developing around the nerves inside the body (plexi-forma neurofibromas) Bumps on the iris of the eye (Lisch-nodules) Tumors in the optic nerve Freckling in the armpits or groin area Skeletal changes, such as deformed vertebrae Ågrenska 2013, 5 Skin problems in NF The light brown spots, can be found in almost everyone with NF (95%). These spots almost always appear during the first few years of life. The little bumps on the skin, neurofibromas, look like flesh-colored warts. These, too, can be found in many people with NF. These bumps appear during childhood, but seldom before the age of about 10. More tend to appear in the teen years. They are harmless but may cause discomfort. They may hurt or be in the way depending on where on the body they are located. Adults with NF sometimes have these bumps removed. For instance, bumps on the eyelids, which may impair vision. Some neurofibromas, may grow not only in the skin, but also inside the body (plexi-forma neurofibromas). Ågrenska 2013, 6 These are soft, insensitive, and they branch out. They may grow around nerves and vessels. Whether they are a bother depends on where and how they grow. Sometimes they can be removed. They also tend to appear early, often before the child is 2. Freckling in the groin and armpits is also common in people with NF (approximately 80%). Vision problems Bumps on the eyelids can disturb vision. Sometimes these bumps can be removed. Tumors on the optic nerve can impair vision. Sometimes these tumors have to be removed or treated with chemotherapy. Pigment bumps in the iris of the eye are tiny. They are only visible using special instruments They do not affect vision. Ågrenska 2013, 7 Astigmatism is common. Many people with NF wear eyeglasses. Learning difficulties About half of all children with NF have learning problems. These children may find it difficult to learn new things learn to read and write concentrate be attentive Some children with NF are also overactive. Some are diagnosed with ADHD. They are both overactive and have trouble concentrating. Some may find it difficult to cooperate with others. They may also have trouble understanding how others think and what they feel. Some people with NF may also have trouble interpreting what they see and hear. Motor activity (movement) Some children with NF learn to walk, jump, run and ride a bike later than other children. Ågrenska 2013, 8 Some children may also have problems with small movements. They will learn, for instance, to draw, cut with scissors and tie their shoes later than other children. How common is NF? In Sweden about 30 children a year are born with NF. NF is just as common in boys as in girls. What causes NF? The human body is made up of millions of cells. Different cells have different functions. Some cells develop into the heart, for example, and make it work well. Other cells develop, for instance, into the kidneys, the skin or the brain. Each cell is so tiny it can barely be seen. Yet each cell is fully programmed. This is called our genetic make-up. The program determines what each cell will become and do. Sometimes the programming goes wrong. When that happens, the person may have a sickness or a syndrome. Ågrenska 2013, 9 Can children inherit NF? If one of a child s parents has NF the child can inherit it. If one of the parents has NF there is always a 50% risk that the child will have it. Half of all children with NF have inherited it from one of the parents. Children can be born with NF even if neither parent has it. About half of all children born with NF have two parents who do not have NF. Something went wrong with those children s genetic make-up when they were conceived. When can the doctors suspect that a child has NF? Children with NF are often born with lots of light brown spots. Skin growths often appear before the child is 2. Ågrenska 2013, 10 Pigment bumps in the eye usually appear when the child is over 4. There are people with NF who live their whole lives and never know they have NF. That is because they have so few symptoms. How is the diagnosis made? In order to be diagnosed with NF the child must have a number of symptoms. If one of the parents or the child s brother or sister has NF it is easier to make the diagnosis. Other symptoms About one third of adults with NF are somewhat short. Lots of adults must have skin growths removed. The growths sometimes itch, hurt, or rub against clothing. The soft growths, inside the body, surrounding nerves and vessels, sometimes put pressure on the nerves. Ågrenska 2013, 11 This may cause problems including less ability to feel or difficulty moving some part of the body. People with NF are at somewhat greater risk than others of developing epilepsy. They are also at slightly greater risk of developing other tumors in their bodies. Most of these tumors are harmless. Some people may feel worried or depressed. Some people with NF may have sleep problems. Some have pauses in breathing at night, (sleep apnea). This disturbs sleep. Adults with NF should have regular medical checkups It is important for adults with NF to have regular medical checkups once every year or two. The doctor should check your blood pressure skin heart and lungs reflexes vision and hearing Ågrenska 2013, 12 At these checkups the doctor can also tell you if any of the skin growths need to be removed. These checkups are also important for finding tumors early. It is important to tell the doctor if you are feeling depressed. There is good medication to treat depression. Physical exercise Exercise is good for your health. It is a good idea to work on your strength mobility balance fitness relaxation A physiotherapist can help you develop an exercise program suited to your needs. It is important to have good posture when you work. Physiotherapists and occupational therapists can help you find good positions for sitting and standing at work. Ågrenska 2013, 13 They can check that your chairs and tables are good for your needs. They can also help you find useful assistive devices. Dental care is important It is important to brush your teeth both morning and evening. Always use fluoridated toothpaste. The dentist can give you good advice about how to keep your teeth clean and healthy. Children with NF often get their teeth earlier than other children. Sometimes braces may be needed. Adults with NF may have bumps in their mouths. These bumps can be removed if they are bothersome. Support and help in the community People with illnesses and syndromes may need help and support from community services. You may need help in finding a job or some other occupation. Ågrenska 2013, 14 If you are living on your own, you may also need help to manage things like shopping and cleaning. There are laws regulating the rights of people with an illness or a syndrome to support and help. For instance, some help is available under the Social Services Act (SoL). What determines your right to support is the extent of your difficulties and needs. The Health and Medical Care Act (HSL) may entitle you to health care habilitation personal aids transportation to and from the hospital or health centre You can get help from the habilitation centre in applying for medical and transportation services. Ågrenska 2013, 15 The National Insurance Office (Försäkringskassan) works with benefits and support for people with illnesses or a disability. Below are a few examples of benefits you can apply for from the National Insurance Office. Activitiy compensation is for people between the ages of 19 and 29 who have an illness or a disability.? You are eligible for activity compensation if you have been unable to work for at least a year because of a disability. The size of your activity compensation will depend on how much you are able to work. You are also eligible for activity compensation if you have to extend your schooling for extra years because of a disability. This applies both to secondary and upper secondary school. Ågrenska 2013, 16 Sickness compensation is for people between 30 and 64 who have an illness or a disability. If you will probably never be able to work full time you may be eligible for sickness compensation. The size of your sickness compensation will depend on how much you are able to work. Automobile compensation People with a disability may be eligible for automobile compensation. For example, if you must have a car in order to be able to work or study. You can get automobile compensation, for instance to buy a car have a car adapted to your needs take driving lessons You might need to have your car adapted if you are particularly short, for example. Ågrenska 2013, 17 Occupational aids Your employer is responsible for adapting the workplace to the people who work there. An employer can receive support for aids or for adapting the workplace so it is well suited. If you need aids for your life outside the workplace, you can get help from the health and medical care services. Housing supplement If you are receiving activity or sickness compensation you will also be eligible for a housing supplement. How much supplement you receive depends on how much money you earn and how high your rent is. Children with disabilities Parents taking care of a child with a disability can get a childcare allowance if the child needs special care or looking after for at least six months. You can also get a childcare allowance to cover additional costs. Ågrenska 2013, 18 Additional costs may be, for instance, if the child needs special food or wears out his or her clothes very fast. Interview Eva has NF Eva is 45. Here she talks about what it is like to be an adult with NF. What is it like to be an adult with NF? I have a good job. My work is not affected by my NF. I was diagnosed at the age of 28. Before that nobody understood the cause of my problems. Since then a lot of my questions about NF have been answered. I wish I had regular contact with a good doctor. That would be a doctor who knows a lot about NF. Ågrenska 2013, 19 More than I know. That doctor would help me to get regular checkups. One problem I have is that my eyesight in my right eye is getting worse. I can hardly see anything at all in that eye. I have an appointment to have my vision checked. My fibromas (growths) have not been a problem for me. They have not bothered me or rubbed against my clothes. But now something is changing. I am developing more and more growths. I do not know why. What was your childhood like? At school I was in a special class. I had trouble concentrating and sitting still. I did all kinds of things. The teachers were not happy about that. I thought the teaching was good. There is not much Ågrenska 2013, 20 to complain about. The problem was that I was bullied. The special class was in a regular school. At recess the other children made life difficult for my classmates and me. Do you have vocational training and a job? After leaving school I went to see the employment service. They told me no one who had been in a special class ever got a job. That destroyed my self-confidence. I moved to a different city. That changed everything. After only one week the employment service called. I was offered a job. Ever since then I have had a job or studied. I finished compulsory school. Ågrenska 2013, 21 Then I studied first to become a nurses aide and then an assistant nurse. Since then I have had work in the healthcare sector. Studying and working helped me grow as a person. I now have good self-confidence and self-esteem. What are things like today? Now I have a daughter. She has NF too. Her problems are much more serious than mine. So I try to help her as much as I can. ADULT HAB What are your wishes for the future? I would like a referral to the adult habilitation services. I have got so many questions about NF. I also hope they will not make too many changes at my workplace. I have trouble with changes. Ågrenska 2013, 22 Ågrenska, Box 2058, Hovås, Sweden Phone Ågrenska 2013, 23
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