It’s challenging enough to have a child with a health problem or developmental delay. But for parents of children whose symptoms don’t match up to any particular diagnosis, the road is even bumpier.
Now one Texas mom is hoping to ease the way for other parents of children with unknown illnesses by promoting a national registry.
Heather Long’s son Charles died of an unidentified neurodegenerative condition in 2006 at age 5 after living with weak bones, difficulty eating and poor motor skills.
Today, Long is promoting a bill in Congress which would create a national database for doctors and researchers to input information about children like her son. Such a system would be designed to foster better communication among medical professionals so that conditions can be identified, treated and cured.
Currently, doctors say, there are few places to turn for information when treating a child with an unidentified illness.
Legislation named for Charles Long, which would create a registry, is now under consideration in the House of Representatives, reports the Dallas Morning News. To read more click here.
I’m only for it if it includes all – even adults.
My many conditions some diagnosed some not have kept me out of shelter and more and aren’t correct to get the medicare and better care and caused the catch22 your too disabled- not disabled enoughand created need for the 45 minute fake psyche diagnoses (despite phd testing to show what’s real) to help agencies deny access and discriminate against somone with too many needs “too many medical conditions” while blaming the problems on MH.
I was told i may be too disabled for hud housing with an aide by a legal group who supported cutting the voucher when no physically accessible housing was found. I was also left in the road without shelter advocacy by this legal advocate and others.
This is not unique.
and no one cares enough to stop this system wide problem for those of us wiht unique needs and who are not part of the well lobbied groups.
Please help people understand and care.
Homeless, hopeless hell is not a good place to dump the uniquely disabled.