Reference given for the Physical Therapists

While visiting the experts today at Advocate Lutheran General Hospital, we were given a packet to pass along to the local Physical Therapist that we will see once we get home. The packet is from Cincinnati Children's Hospital, but given to us from our Chicago group. This is for our new PT, who is not an EDS (Ehlers Danlos Syndrome) specialist, but who is comfortable working with patients who are hypermobile. If this is of help to any of you or your medical team, please download and add to the file. It is recommended for a variety of medical professionals, just click the link for the packet below.


Download the pdf online, here: Identification and Management of Pediatric Joint Hypermobility In children and adolexcents aged 4 to 21 years old
Published October 21, 2014

From High School to College?

Bean's 9th Grade Art Project

If navigating the smaller scale of a middle school was too much and conquering a high school proved to be an obstacle, how on earth will a person with EDS manage college?
That is the question we are facing, now. This is the time in the high school process that kids begin thinking about college, planning for tests, thinking about narrowing down a future.
While this is not easy for any teen, I suspect the difficulty multiplies with Ehlers Danlos Syndrome forcing itself into the mix. As a parent, some things that I am focusing on are to encourage my little zebra to seek her interests and to look toward a future. That is the key takeaway. Even when facing these obstacles, the future will hold joy and it is worth pursuit.
The second thing I think about is a school that is near home. It is unrealistic to think that Bean will be fine in a dorm without help that is very near by. So, close to home. We are lucky in Chicago area as there are many great schools right here. Great.
Third, size of campus and accessibility are very important. There will be times when a wheelchair will be needed and in winter in Chicago, not all campuses will be manageable. Some will come out as clear winners for their thoughtfulness when it comes to accessibility.
We will be talking with the school support about this process and attending college fair for disabilities. In addition, we'll get to a point where we narrow down the options and when we do, I will come back and share. I would love to hear from you to know what has been helpful in this process!