Personal Relationships

  • Social connections are critically important for ensuring health, well-being and quality of life
  • Sometimes opportunities for personal contact and social engagement happen less naturally and require more of an intentional effort to foster and facilitate social connections. Many social groups exist for teens and adults with Duchenne and can be found through contacting major advocacy organisations. Your social worker may have a list of social groups that you may be interested in as well
  • Dating, intimacy, and sexuality are high-priority topics among some people living with Duchenne. Try starting these discussions around relationships, dating, sexual orientation, and marriage with a trusted friend or family member. They may also be able to talk to you about trouble-shooting barriers to developing social relationships and participating in social events. Talking with someone on your neuromuscular team may be helpful as well
  • During routine primary care and specialty appointments, you should have someone on your neuromuscular team that you feel comfortable asking about masturbation, having sex with a partner, parenting children, or other intimate topics. When appropriate, getting guidance, together with your partner, from a marriage or relationship therapist may be helpful