Support and advocacy groups can help you connect with other patients and families, and they can provide valuable services. Many develop patient-centered information and are the driving force behind research for better treatments and possible cures. They can direct you to research, resources, and services. Many organizations also have experts who serve as medical advisors or provide lists of doctors/clinics. Visit the group’s website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD.
Being easily bruised is often an unfortunate symptom as well, and is caused by narrow blood vessels. Even a small poke can cause a person with EDS to form a tender bruise. Blood vessels are likely to be extremely delicate, and require constant monitoring to ensure that the individual doesn’t rupture a vein or develop an aneurysm. Sadly children that have EDS are often not properly diagnosed at a young age. Therefore their parents are typically accused of child abuse, especially if the child has frequent bruises and scarring on the body due to minor injuries.
Yes, a double curve (the “S” curve) is typically more challenging to treat. Here we use an exercise based treatment program rather than take a wait and see approach. The problem with the wait and see approach is that if the curve is progressive, the patient has lost the opportunity to treat a smaller curve and any treatment will need to be much more aggressive (whether it is surgery, bracing or exercise based)
Over 90% of children with AIS have no pain. Contrast this with a 57% incidence of occasional back pain among adolescents and it is likely that your son’s back pain is unrelated to his scoliosis.