Conference to Connect Medically Complex Teens, Parents with Peers

An upcoming CHOC Children’s 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.

medically complex

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.

Related posts:

  • Trisomy Awareness Month: What Parents Should Know
    In honor of National Trisomy Awareness Month, we spoke to a team of genetic counselors from CHOC Children’s Metabolic Clinic.  ‘Tri’ refers to three, and ‘somy’ refers to ‘body’ or ...
  • Neurofibromatosis Type 1: What Parents Should Know
    Many children can be born with or develop one or more birth marks that can vary in size, color and shape, but do not usually pose any health risk. However, ...
  • Preventing & Screening For Birth Defects
    In honor of Birth Defects Prevention Month, we spoke to Dr. Neda  Zadeh, a CHOC Children’s geneticist and the associate director of the Molecular Diagnostic Laboratory at Genetics Center.  Dr. ...