CNS vasculitis: Coping with illnessCCNS vasculitis: Coping with illnessCNS vasculitis: Coping with illnessEnglishHaematologyChild (0-12 years);Teen (13-18 years)BrainArteries;Veins;Capillaries;BrainSupport, services and resourcesCaregivers Adult (19+)NA2009-11-06T05:00:00ZSusanne Benseler, MD;Holly Convery, RNEC, BScN8.0000000000000062.0000000000000656.000000000000Flat ContentHealth A-Z<p>When a child is ill, all of the family members are affected by the stress. Read about effective coping techniques for the families of sick children. </p><h2>CNS vasculitis can be stressful for parents</h2><p>Chronic disease comes with turmoil for you, your child and your other children. Most parents are already very busy caring for children, maintaining the household and usually working at their jobs. It is only natural that taking care of a sick child will make you feel overwhelmed. You may also be worried about money or strained relationships.</p> <p>It is extremely important to ask for support wherever you can:</p><ul><li>Friends and family can help by coming to appointments, doing household chores, caring for other children or just buying you a cup of coffee.</li><li>Your employer can give you time off work for a stress leave. Social workers can help contact employers and arrange this time off.</li><li>Your family doctor can help you stay in good health. It may be tempting to overlook yourself to take care of your child, but if you get sick you will not be able to help at all. If you take care of your own body, your child will learn to do the same.</li><li>Social workers at the hospital can help you and your child deal with personal, family or social problems that are related to your child's illness.</li></ul><h2>Key points</h2> <ul> <li>Take care of yourself. Ask friends, work and your family doctor for support. A social worker can also help you. </li> <li>Your other children may feel neglected, guilty or anxious. Try to spend time with them and remind them that their brother or sister's disease is not their fault. </li> <li>You may be able to get financial support. </li> <li>Ask your social worker or doctor if you would like to get in touch with another family whose child has had CNS vasculitis.</li> </ul>
Vasculite du système nerveux central : faire face à la maladieVVasculite du système nerveux central : faire face à la maladieCNS vasculitis: Coping with illnessFrenchHaematologyChild (0-12 years);Teen (13-18 years)BrainArteries;Veins;Capillaries;BrainSupport, services and resourcesCaregivers Adult (19+)NA2009-11-06T05:00:00ZSusanne Benseler, MD;Holly Convery, RNEC, BScN8.0000000000000062.0000000000000656.000000000000Flat ContentHealth A-Z<p>Consultez les techniques que les familles d'enfants malades peuvent adopter pour faire face à la maladie.</p><h2>La vasculite du système nerveux central (SNC) peut être stressante pour les parents</h2><p>Les maladies chroniques entraînent d'importantes perturbations pour vous, votre enfant atteint et vos autres enfants. La plupart des parents consacrent déjà beaucoup de leur temps à s'occuper de leurs enfants et de la maison, et à travailler. C'est normal de se sentir parfois débordé lorsqu'on doit en plus s'occuper d'un enfant malade. Vous aurez peut-être des inquiétudes financières et certaines relations interpersonnelles peuvent devenir plus difficiles.</p> <p>Il est très important que vous demandiez de l'aide partout où vous pourrez en obtenir :</p><ul><li>Les amis et la famille peuvent vous aider à venir aux rendez-vous, à accomplir certaines tâches ménagères, à prendre soin des autres enfants, ou vous offrir simplement un café.</li><li>Votre employeur peut vous donner des congés liés au stress. Des travailleurs sociaux peuvent communiquer avec les employeurs pour négocier de tels congés.</li><li>Votre médecin de famille peut vous aider à rester en santé. Il est parfois tentant de se négliger pour prendre soin de son enfant, mais si vous tombez malade, vous ne pourrez plus l'aider du tout. Si vous prenez bien soin de vous, votre enfant apprendra à faire de même.</li><li>Des travailleurs sociaux de l'hôpital peuvent vous aider, vous et votre enfant, à composer avec certains problèmes personnels, familiaux ou sociaux liés à la maladie de votre enfant.</li></ul><h2>À retenir</h2> <ul> <li>Prenez soin de vous. Demandez de l'aide à des amis, des collègues, votre médecin de famille. Un travailleur social peut également vous aider.</li> <li>Vos autres enfants peuvent se sentir négligés, coupables ou inquiets. Essayez de leur consacrer du temps et rappelez-leur qu'ils ne sont pas responsables de la maladie de leur frère ou de leur sœur.</li> <li>Vous avez peut-être droit à une aide financière.</li> <li>Parlez à votre travailleur social ou à votre médecin si vous voulez entrer en contact avec d'autres familles dont un enfant est atteint d'une vasculite du SNC.</li> </ul>

 

 

CNS vasculitis: Coping with illness1126.00000000000CNS vasculitis: Coping with illnessCNS vasculitis: Coping with illnessCEnglishHaematologyChild (0-12 years);Teen (13-18 years)BrainArteries;Veins;Capillaries;BrainSupport, services and resourcesCaregivers Adult (19+)NA2009-11-06T05:00:00ZSusanne Benseler, MD;Holly Convery, RNEC, BScN8.0000000000000062.0000000000000656.000000000000Flat ContentHealth A-Z<p>When a child is ill, all of the family members are affected by the stress. Read about effective coping techniques for the families of sick children. </p><h2>CNS vasculitis can be stressful for parents</h2><p>Chronic disease comes with turmoil for you, your child and your other children. Most parents are already very busy caring for children, maintaining the household and usually working at their jobs. It is only natural that taking care of a sick child will make you feel overwhelmed. You may also be worried about money or strained relationships.</p> <p>It is extremely important to ask for support wherever you can:</p><ul><li>Friends and family can help by coming to appointments, doing household chores, caring for other children or just buying you a cup of coffee.</li><li>Your employer can give you time off work for a stress leave. Social workers can help contact employers and arrange this time off.</li><li>Your family doctor can help you stay in good health. It may be tempting to overlook yourself to take care of your child, but if you get sick you will not be able to help at all. If you take care of your own body, your child will learn to do the same.</li><li>Social workers at the hospital can help you and your child deal with personal, family or social problems that are related to your child's illness.</li></ul><h2>Key points</h2> <ul> <li>Take care of yourself. Ask friends, work and your family doctor for support. A social worker can also help you. </li> <li>Your other children may feel neglected, guilty or anxious. Try to spend time with them and remind them that their brother or sister's disease is not their fault. </li> <li>You may be able to get financial support. </li> <li>Ask your social worker or doctor if you would like to get in touch with another family whose child has had CNS vasculitis.</li> </ul><h2>CNS vasculitis can be stressful for siblings</h2> <p>CNS vasculitis also has an impact on your other children and family members. Siblings often feel neglected, out of the loop, guilty and anxious about their own health. To address these feelings, it may help to: </p> <ul> <li>Spend one-on-one time with your children. </li> <li>Remind your children that their brother or sister's disease is not their fault. </li> <li>Tell your children that it is very unlikely that they will also get CNS vasculitis. </li> </ul> <p>This awareness will help your family cope with the disruption to their regular life.</p> <h2>You may be able to get financial support</h2> <p>Many provinces and countries offer financial support to families who are coping with large medical expenses. In Ontario, you may be eligible for one or more of the programs listed here. A social worker can help you find out what programs you can apply for.</p> <h3>Trillium Drug Program</h3> <p>The <a href="https://www.ontario.ca/page/get-help-high-prescription-drug-costs" target="_blank">Trillium Drug Program</a> gives grants to families who spend a large part of their income on medicines. <br></p> <h3>Assistance for Children with Severe Disabilities</h3> <p>Assistance for Children with Severe Disabilities (ACSD) gives grants to families who meet the following criteria:</p> <ul> <li>The household income is under $62,000 per year. </li> <li>The sick child is under 18 years old. </li> <li>The child's illness is disabling, meaning it affects the child's hearing, eating, walking, seeing, thinking or control of body functions. </li> </ul> <h3>Northern Ontario travel grants</h3> <p>Families in Northern Ontario are eligible for travel grants. Your family doctor can give you more information on this program.</p> <h3>Tax deductions</h3> <p>All families are eligible for tax deductions for medical expenses. Keep all receipts related to your child's illness for when you fill out your income taxes. </p> <h2>You may wish to speak to other families</h2> <p>It might be helpful for you to get in touch with other families whose child has CNS vasculitis or has recovered. Feel free to ask your doctor or social worker for contact information. Specify whether you would like to speak with families who are in the middle of the disease or families whose child has recovered. They offer different types of support. </p> <p>Children can speak to other patients on Ability Online, a global Internet chat room.</p><img alt="" src="https://assets.aboutkidshealth.ca/AKHAssets/CNS_vasculitis_coping.jpg" style="BORDER:0px solid;" />https://assets.aboutkidshealth.ca/AKHAssets/CNS_vasculitis_coping.jpgCNS vasculitis: Coping with illness

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