Ressourcen für Pflegepersonen
Caregivers in the rare disease community face some exceptional hurdles. You may even have faced the special challenge of having to be the one to educate your medical providers and others about Erdheim-Chester disease. So you need information, education, and tools that can help you manage the many daunting tasks you face as you care for your loved one. The sources below will direct you to organizations that offer assistance and/or information that may help.
To connect with others caring for loved ones with ECD, join our virtual chats for caregivers. Register for the next meeting here.
Caregiver Respite Programs
NORD provides financial assistance to enable caregivers a break to attend a conference, event, or simply have an afternoon or evening away from caregiving. Awards are granted on a first-come, first-served basis to eligible individuals.
Advocacy and Support
Family Caregiver Alliance This organization provides a public voice for caregivers, offering assistance through education, services, research, and advocacy.
Empowering Caregivers This site provides a safe, nurturing site for all caregivers with emotional and spiritual support and a vast amount of both online and offline resources for caregivers.
The Invisible Disabilities Association (IDA) encourages, educates, and connects people and organizations touched by illness, pain, and disability around the globe. IDA also offers resources for information about various illnesses, help with costs of medications, disability benefits, and more.
HealingWell.com features a thriving support community, blog, videos, a newsletter, articles, and resources to help patients actively manage the challenges of living with chronic illness.
Die Academy of Nutrition and Dietetics (formerly the American Dietetic Association) provides accurate information and various resources about nutrition, wellness, and related areas.
American Nutrition Association The American Nutrition Association promotes optimal health through nutrition and wellness education. Educating both laypeople and professionals about the health benefits of nutrition and wellness, it focuses on science-based nutrition.
LLS One-On-One Nutrition Consultations Patients and their care partners may receive a free one-on-one phone consultation with one of LLS’s registered dietitians who have expertise in oncology nutrition. Eating well helps people with cancer feel better, stay stronger, and better tolerate the side effects of treatment. Good nutrition also helps the body replace blood cells and healthy tissues that are damaged as a result of cancer treatment. You can schedule online or call LLS’ Nutrition Education Services Center at 877-467-1936. Schedule an appointment and learn more here: www.LLSnutrition.org/schedule.
The US National Institutes of Health (NIH) has a Caregiving Toolkit to provide informatoin and resources to support caregivers.
Global Genes, a global community of non-profit organizations and support groups who are committed to changing the way the world tackles rare disease, provides a toolkit for Caregivers.
A peer-reviewed scientific study of ECD caregivers has been published and can be found here. This study sought to characterize unmet needs and experiences of caregivers of patients with Erdheim-Chester disease (ECD) and other histiocytic neoplasms (HN) and to identify factors associated with finding benefit and meaning-making in providing care for patients with rare cancers.
Caregiver Articles
| Informationen | Website |
|---|---|
| Erstellen Sie einen individuellen Leitfaden für Pflegekräfte, der genau auf Ihre aktuellen Bedürfnisse als Pflegekraft zugeschnitten ist. | https://www.helpforcancercaregivers.org/ |
| Bietet Beratungsdienste und Informationsmaterialien an, die Pflegekräfte dabei unterstützen sollen, sich auf ihre Pflegeaufgaben vorzubereiten. | http://www.caregivingclub.com/ |
| Ein visuelles Bildungszentrum für pflegende Angehörige | http://www.videocaregiving.org/caregiving.php |
| Tool box of resources for caregivers | http://caregiveraction.org/resources/toolbox/ |
| Leitfaden für Pflegekräfte zum Verständnis von Verhaltensweisen bei Demenz | https://www.caregiver.org/caregivers-guide-understanding-dementia-behaviors |
| Checklisten und Informationen zur Unterstützung der Pflegeperson | http://www.agis.com/caregiverkit/caregiverkit.pdf |
| Sechs Tipps für Senioren zur Verbesserung des Gedächtnisses | https://www.psychologytoday.com/blog/memory-medic/201011/six-things-seniors-can-do-improve-memory |
| So richten Sie Ihr Zuhause für einen an Alzheimer erkrankten Angehörigen ein: Ein Leitfaden für Pflegepersonen | https://www.redfin.com/blog/2016/09/preparing-your-home-for-a-loved-one-with-alzheimers-a-caregivers-guide.html |
| Pflegepersonen im Umgang mit chronischen Erkrankungen – von der National Dysautonomia Research Foundation | http://www.ndrf.org/Caregiving.htm |
| Eine Website, die Familienangehörigen, Freunden, Nachbarn und Kollegen ein Tool zur Verfügung stellt, mit dem sie in Notfällen gemeinsame Aktivitäten organisieren können. | http://www.lotsahelpinghands.com/ |
| Allgemeine Informationen zu Pflegekräften oder Betreuern. | http://en.wikipedia.org/wiki/Caregiver |
| Pflege: Ein universeller Beruf – Betreuung von Erwachsenen mit kognitiven und Gedächtnisbeeinträchtigungen | http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=392 |
| Website für persönliche Weiterentwicklung und Selbsthilfe | http://www.healyourlife.com/wisdom |
| Eine landesweite Initiative zur Einbindung von Verbrauchern und der Bevölkerung zur Verbesserung der Versorgung am Lebensende. | http://www.caringinfo.org |
| 10 einfache Tipps, wie Senioren ihre psychische Gesundheit und ihr Wohlbefinden verbessern können | http://www.everydayhealth.com/news/easy-ways-seniors-can-boost-mental-health-well-being/ |
| Die richtige Ernährung für Ihr Gehirn im Alter | http://health.usnews.com/health-news/health-wellness/articles/2016-01-05/eating-for-your-brain-as-a-senior |
| Trauer um den Tod eines Elternteils oder Ehepartners | https://www.agingcare.com/articles/mourning-spouse-s-death-133316.htm |
| Psychische Gesundheit zu Hause fördern: So gestalten Sie den perfekten Meditationsraum | http://www.homeadvisor.com/r/meditation-room/#.WXJN3ojyuM8 |
| MedicAlert Caregiver Resources | https://www.medicalert.org/caregiver-resources/ |
Caregiver Community Resources
| Beschreibung des Blogs/Podcasts | Website |
|---|---|
| Eine Pflegekraft, die ihren chronisch kranken Ehemann pflegt, schreibt über ihre Erfahrungen | http://spousalcare.blogspot.com |
| Podcast einer ehemaligen Pflegekraft eines ECD/LCH-Patienten | https://www.forthosewhocare.org/ |
Caregiver Books
| Beschreibung des Blogs | Website |
|---|---|
| In Krankheit und Gesundheit | https://a.co/d/e2bQnHu |
| In Krankheit wie in Gesundheit: Paaren helfen, mit den Herausforderungen einer Krankheit umzugehen | https://a.co/d/64d8iLl |
| Das Handbuch für pflegende Ehefrauen: Die Pflege Ihres schwerkranken Ehemanns und die Selbstfürsorge | https://a.co/d/6Dy7z4n |
| Wenn Ihr Ehepartner an einer chronischen Erkrankung leidet | https://a.co/d/6rN8EDR |
| Eine neue Normalität finden: Mit einer chronischen Erkrankung das Beste aus dem Leben machen | https://a.co/d/3GBo7hq |
| Wie geht es nun weiter? Den emotionalen Weg der Langzeitpflege bewältigen | https://www.amazon.com/Now-What-Managing-Emotional-Families/ |
ECD medical experts in our community have helped compile two types of brochures for general education and awareness purposes. The patient brochure is available to help new members of the community understand the basics of ECD. The medical brochure is available to share with your care team or any medical professional. Request a free copy by filling out this form.
If you know of other resources that should be listed, please contact us.