About six families affected by B/DMD attended yesterday's informal meeting with Harvard medical students; Living with Chronic Conditions. There was a broad age range of boys/young men represented, from 2 years old all the way to 46 years old!!
Discussion topics included; - How diagnosis of a chronic, potentially life limiting disorder should be given
- The many actions that parents often take when faced with a devastating disorder, including non-traditional therapies
- How physicians should put into perspective the needs of parents - and how they often differ from the needs of the actual child/patient
- The urgency to craft medical students into a neuromuscular practice interest
- Emphasis on seeing those with chronic conditions as individuals and how clinicians often lump patients by diagnosis "the DMD boy v. the boy diagnosed with DMD"
- Assisting families and patients through the diagnosis, respecting the parents insight and knowledge
- Understanding that this disorder affects the entire family and their dynamics, for example - a DMD diagnosis affects where a family lives, financial responsibilities, vacations, education, health insurance, transportation, relationships, siblings, extended family, holidays, housing, sports/recreation - when DMD affects a family, it affects everything in that family
- Could programs that include the ENTIRE family serve a role? For example, a CAMP where families (including siblings) go for 4-5 days? Parents have support of other parents and perhaps some therapeutic assistance, siblings get to bond and hang out with other siblings who have a brother/sister that has a muscular dystrophy - there are several camps like this (family camps) for families affected by cancer and participants have given great feedback and results
- Vocation ideas for affected young men
- Different ways that families tell their son(s) about their diagnosis, how doctors can help parents through this difficult time
Thank you for taking the time to educate and ignite these future doctors with some very important messages!