Kids-In-Crisis is an online resource page for kids and teens, like you, who are having difficult life problems or have questions and don't know how or where to turn for help.

Kids-n-Illness

Last revised 6-17-04.

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Alex's Advise

Specific Illness
Information Resources

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Kids-n-Illness

Kids-in-Illness page is dedicated to Tom Unger, a friend of Kids-in-Crisis. Back in 1998-99, Tom was a teenager living in Germany and had a congenital heart problem. Tom asked me if I could put a page like this together. He had never seen a page with resources for kids like him who lived with serious or terminal ailments.

Since that time, many pages have been established on the Internet that deal with a wide range of medical conditions that affect young people. This page was never meant to be a comprehensive source, but to serve as a beginning.

Why me? Why do I have to have this condition?

We all come into this life with a certain set of inherited abilities and limitations. Some of us have extra things that we have to live with such as an illness, a medical condition or some physical, emotional or psychological limitation. The most important thing for you to try to concentrate on is that however you are put together, you are special! And it is that specialness that you need to focus on and to emphasize!

Are there others who have to deal with the same things I do?

Most likely the answer to this question is YES! With the development of the Internet and the many technology advances that are being made everyday, most people can secure access to the Internet and can learn about their particular illness or condition. Some may even be able to share their thoughts and feelings with others in similar circumstances. Many times, sharing what you are dealing with helps you and it helps the one with whom you are sharing.

Alex's advise:

A wise young friend once taught me that the very best thing we can do for ourselves and all those around us is to make the most of what we have instead of concentrating on the things we don't have!

Online Resources

This section lists organisations and websites that offer real help for kids and teens who need help dealing with illness or disability .

Online Resources We are always looking for additional online resources. If you know of one, please email us the information. Thanks!
ConvoNation	ConvoNation is all about being young and living with an illness or disability. It's an Internet community of sick and disabled young people sharing their experiences. It's a place to laugh and cry, and to make new friends. http://www.cmtsj.org/PULSE/Convonation/ [6/17/04 - We've noticed that the site is no longer being maintained, however, there is some very interesting historical information and a reference to a new site: CommonThread.]
CommonThread	CommonThread is a website created for challenged young people, by young people. http://www.commonthread.org
Band-Aides and Blackboards	[This very good site was not working on 6-17-04. We are hoping it resurfaces in the near future!] This is a site about growing up with medical problems...any ole type. Its goal is to help people understand what it's like, from the perspective of the children and teens who are doing just that. These kids have become experts at coping with problems that most of you have never heard of. They'd like you to know how they do it, and they hope that you'll be glad you came to visit. The webmaster has divided the contents into three ponds; one for kids, one for teens, and one for adults. Figure out which you are, and jump in. http://funrsc.fairfield.edu/~jfleitas/contents.html
Dr. Froggie	Dr Froggie, as she is known to many Canadian kids and their families living with a disability or chronic illness, is a Child Psychiatrist on staff at The Hospital for Sick Children in Toronto, Canada. This is an excellent resource and contains numerous pages of information and links concerning many disabilities and chronic illnesses. http://www.froggie.org/pediat1.htm
The Telephone Helplines Directory - UK	This Directory has over 1,100 national, regional and local telephone helplines throughout England, Wales, Scotland and Northern Ireland, all of which have demonstrated to the Telephone Helplines Association (THA) that they follow principles of good practice in their operation. http://www.helplines.org.uk/helpline_search.htm
Pain.com - A World of Information on Pain	This site contains many articles and other informational links relating to the topics of pain and pain management. http://www.pain.com/
Virtual Hospital	The Virtual Hospital is a digital health sciences library created in 1992 at the University of Iowa to help meet the information needs of health care providers and patients. The goal of the Virtual Hospital digital library is to make the Internet a useful medical reference and health promotion tool for health care providers and patients. The Virtual Hospital digital library contains hundreds of books and brochures for health care providers and patients. http://www.vh.org/
Starbright	Starbright is dedicated to the creation of projects that empower seriously ill children and teens to address the challenges that accompany prolonged illness and give them back their childhoods. http://www.starbright.org/
Our-Kids	Our-Kids is a "Family" of parents, caregivers and others who are working with children with physical and/or mental disabilities and delays. The Our-Kids list consist of over 800 people representing children of varying diagnosis; everything from indefinite developmental delays and sensory integration problems, to cerebral palsy, to rare genetic disorders. Over 35 countries are represented on the list now. Here we can discuss our children's accomplishments and defeats, knowing that the audience includes others who know what we are going through. We can also get some idea of how others address specific problems/concerns with feeding, learning, schools, medical resources, techniques and equipment, as well as describing the problems to friends and family or just coping. http://www.our-kids.org
The Invisible Disabilities Advocate	The Invisible Disabilities Advocate was designed to help friends and family develop a better understanding of disabling illness and injury. IDA provides helpful links to sites and organizations of several diseases, disorders and conditions, as well as a support board. http://www.myida.org/ida.htm
Apple Disability Resources	The Apple Computer, Inc., has a number of products especially to meet disability needs. http://www.apple.com/education/k12/disability
Disability Legal Guide	A directory of websites offering information on disabilities law. http://www.legaldirectory.ws/Labor_Law/Disabilities_Lawyer/default.aspx

Hotlines

Online Resources Hotlines We're looking for hotlines that are appropriate for ill or terminal kids. If you know of one, please email us the information. Thanks!
Center for Disease Control and Prevention	1-800-232-7468 (U.S.)
Allergies & Asthma	1-800-822-2762 American Academy of Allergy, Asthma & Immunology
Anorexia Nervosa & National Association of Anorexia Nervosa and Associated Disorders	1-847-831-3438 (U.S.)
The Caring Tree (Big Bend Hospice)	1-850-878-5310 or 1-800-772-5862 in Tallahassee, Florida. The Caring Tree (Big Bend Hospice) is a support team for families with a child diagnosed with a life limiting condition. The Caring Tree also provides grief support for children and teens.
Ronald McDonald House	1-850-222-1706 in Tallahassee, Florida. This Ronald McDonald House is a house away from home for families of children in medical crisis.

Specific Ilnness Online Resources We're always looking for specific illness information resources. If you know of one, please email us the information. Thanks!
Chronic Fatigue & Immune Dysfunction Syndrome
CFIDS - Jamie Wellman's Page	"Hello, my name is Jaime Wellman and I'm 18 years old. (see my homepage to learn about me outside CFIDS). I was diagnosed with Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS), also known as called Chronic Fatigue Syndrome (CFS), in August of 1995. It may not be the worst of the worst diseases, but yet still it does 'take your life away'." http://geocities.datacellar.net/HotSprings/1683
Juvenile Ankylosing Spondylitis
Juvenile Ankylosing Spondylitis	Presented by the Spondylitis Association of America, this page contains information about the disease, as well as links to other related and helpful information. http://www.spondylitis.org/about/whatisjuvenile.aspx
Multiple Chemical Sensitivity
Multiple Chemical Sensitivity	Here's your chance to tell your story, share with other teens about living with MCS, and be heard! Dr. Rapp's goal is to collect 1,000 stories from teens with MCS to take to the media to gain recognition for this illness. the site contains a story board and chat link. http://www.drrapp.com/teens.html
Scoliosis
Scoliosis Association of Tallahassee	The Scoliosis Assocaiton of Tallahassee may be reached at 1-850-656-3566.
The Internet Scoliosis Club	Started in of 1997, The Internet Scoliosis Club has been up for more than five years, and has been supporting patients with scoliosis, and their families, throughout this time. Please look through our site and check out our information on scoliosis and our support groups. http://ysabol.net/theinternetscoliosisclub/
Scoliosis	The purpose of this website is to educate people about Scoliosis in a quick and easy way. This page provides basic information on this health topic and has several useful links to help the viewer learn more about Scoliosis. [This page was done in 2002 by a first year student at the University of Virginia and provide some very good basic knowledge. http://www.people.virginia.edu/~mcm3r/scoliosis.htm

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