As some of you may remember, my youngest daughter, Bekah, was diagnosed with Dysautonomia (the same illness I have) last year. Most days, Bekah functions fairly normal for the most part. However, she does have many days when she can't do much more than attend school, come home and go to bed. There are even the occasional days when she can't even do that. She can only stay in bed and rest/sleep because of the tachycardia (high pulse rate), fatigue and nausea that she suffers from. For a 15 year old, having a chronic illness definitely puts a kink in your social life.
A few months ago, I found a very interesting link when I was visiting the site, ButYouDontLookSick.com. The link was to a social networking site for young people ages 13-20. It is called Starbright World. I went to check it out and was really impressed. I even thought it was something my daughter might be interested in.
Here is a little info from their homepage:
'Starbright World is a virtual hangout where you can build on existing friendships or create new ones, from home or from the hospital. Starbright World is an online social network where teens (ages 13 to 20) who have serious medical conditions, and siblings of seriously ill teens, can connect with each other via moderated chat rooms, games, bulletin boards, videos, and more.'
And they have a list of 'some of the illnesses and conditions that qualify for SBW membership':
A – autoimmune disorders, AIDS/HIV, anemia, severe asthma, arthritis
B – burn injuries, brain tumor, blood condition
C – cancer, Crohn’s disease, ulcerative colitis, cystic fibrosis, cerebral palsy, cardiac (heart) problems
D – diabetes (type 1 and 2)
E – endocrine problems, epilepsy
H – Huntington’s disease, HIV/AIDS, hydrocephalus, hypophosphatasia
I – infectious disease, inflammatory bowel disease (IBD)
K – kidney disease
L – leukemia, lupus, liver disease, lymphoma
M – migraine headaches, muscular dystrophy, mitochondrial disease
N – neurological disorder
O – obesity/overweight, osteosarcoma, osteomyelitis
R – respiratory problems, rheumatic disease
S – sickle cell anemia, seizure disorder, spina bifida/myelodysplasia, spinal cord injury, stomach or digestive problems
T – transplants, tumor or mass
U – ulcerative colitis
Since I found the site, Rebekah has become a very involved member. She has been spending A LOT of time there and has made a lot of really close friends that she chats with online quite often. As her mom, I really like the site. It is heavily monitored by adult 'hosts', so no foul language or inappropriate behavior is allowed and any suspicious activity is handled immediately. Therefore, the possibility for adults to be there preying on our children is almost non-existent. Also, for a child to sign up, they must first have parental consent.
So, if you know of a young person who has a chronic illness and think they would like to get to know other kids going through something similar, let them know about Starbright World.
No matter who you are or what you're going through, it helps to know you aren't alone.