Huntington's Disease Society of America
We are nurses who learned about HD through our personal and professional lives, and are working to help youth and family members manage living with HD.
Janet became aware of HD when she was a genetic counselor, and a gentleman who was experiencing symptoms consistent with HD came to our clinic to learn what HD was. When the test for HD was developed Janet realized that not only would the results change the life of the person who had the test, it would be life changing for the family as well.
Martha became aware of HD as a young child through her grandmother ‘s next-door neighbor, whose husband had HD. Her enduring memory was how much the neighbor appreciated her grandmother’s meals and willingness to be supportive. When Martha came to the University of Iowa, she joined Janet’s research team looking at ways to help all HD families get the support they need.
While Janet’s research looks at all family members, Janet and Martha teamed up with others, to look at the needs of teens in HD families. We talked with teens across the US and Canada. We learned so much from these teens and were especially impressed by all they do to provide care to their parent or grandparent with HD who lives at home. We were overwhelmed by their resilience. But most important, we heard them as they repeatedly asked that we remember to let them just be teenagers.
We’ve shared what we learned with nurses, physicians, and members of the HD community through the annual conventions in the US and in Canada and have shared our findings in clinical and research journals. We also developed the HD-Teen Inventory, a tool for health care providers and counselors to use to begin conversations with teens in HD families.
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