An upcoming CHOC conference will help teens with medically complex connective tissue disorders and their parents learn more about their diagnoses – and connect with others who have similar conditions.
The Dec. 3 and 4 “Connecting the Dots … Diagnosing and Treating Children and Adolescents with Medical Complexity” is geared for parents and their teens with a handful of conditions: Ehlers-Danlos syndrome; pain syndromes; postural orthostatic tachycardia syndrome (POTs); dysautonomia; and mast cell activation disorder.
“One of the goals of this conference is for parents and patients to have a better understanding of their condition, how the diagnosis is made, the symptoms as well as what treatments are available. It also gives patients and families a chance to meet others going through the same experiences and having the same or similar diagnoses” says Dr. Neda Zadeh, a CHOC geneticist who will participate in the conference.
Because these conditions are rare and can often take a long time to diagnose, many patients experience feelings of isolation, she says.
“My experience has been that when you tell someone that they’re not alone, that there is a diagnosis, and that there are many other people with this same condition, you can see their body language change immediately usually to a form of relief,” Dr. Zadeh says.
“For many, it is incredibly cathartic for them to hear that there’s a name for this condition, and that it is a real diagnosis and a reason for all of the symptoms they have been experiencing for so many years without knowing or understanding why,” she adds.
Over the two-day conference, parents and teens will hear from a variety of specialists who treat aspects of these conditions, including cardiologists, allergists, pain specialists and anesthesiologists.
On Saturday afternoon, attendees will be broken into two tracks: one for parents and another for teens. During the teens’ break-out sessions, attendees will have an opportunity to anonymously ask specialists questions. The day will conclude with a pizza party, where parents and teens can meet peers who have similar diagnoses and experiences.
Sunday’s session will feature a panel of CHOC experts – including Dr. Zadeh, gastroenterologist Dr. Ashish Chogle, cardiologist Dr. Michael Recto and anesthesiologist and pain specialist Dr. Paul Yost – as well as breakout sessions covering advocacy issues and support systems for raising chronically ill children.
Parents and teens can register for the conference on CHOC’s website.
The conference has a Dec. 3 component solely for the education of medical providers. Parents who think their child’s physician might be interested can also find more information on CHOC’s website.
