Greetings to all. I am a genetic counseling student working on a project to enlighten my fellow students about muscular dystrophy. It is easy to find information about the medical and genetics of MD but I am more interested in the day to day information. I think it is important for genetic counselors to understand the possible obstacles and struggles of families. My questions to the community are:
1. Have you talked with a genetic counselor?
2. What obstacles do you experience that you feel a genetic counselor may not be aware of?
3. Do you have any suggestions for expanding the role of a genetic counselor that would benefit you and your family? (i.e. Talking to schools, educating teachers and physical therapists, obtaining services)
4. What is your most difficult day to day obstacle?

I greatly appreciate any information you can provide to help me understand muscular dystrophy and become a better genetic counselor.

Thank you.
Candace Tietsworth

Views: 83

Replies to This Discussion

1. Yes, we did. My family had phenomenal genetic counseling with both a geneticist and a genetic counselor.
2. There were no obstacles with our genetic team.
3. I do have a suggestion, though. I think there is a missing connection between the school districts (and preschool licensing bodies), their training of teachers concerning spotting some of the most common serious genetic conditions that show in the 3 -7 age group and the field of genetics. Many teachers and childcare/preschool workers are the first to see signs of these diseases, yet most only know to look for the autism spectrum and ADHD. I think some public health outreach from geneticists and other medical experts to educators is needed.
4. Our obstacles are myriad: from mourning and acceptance (early on) to accommodating and being full-time unpaid social workers and case managers (mid-phase) to 24 hour care basic care and watching our children lose abilities and then back to mourning. Many of us deal with guilt, lack of support and lack of understanding for the science of the whole Duchenne situation and quickly have to learn. We must simultaneously learn to live with disability, losing our child and getting on with life while all this goes on.


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