When someone is diagnosed with a genetic condition, there are many questions that arise for both the individual and their family. What will your life look like? What treatment options are there? What is going to happen if I have children? How am I going to adjust to my new diagnosis? These are only a few questions that individuals newly diagnosed with a genetic condition may have. While there are many resources through the medical system for individuals diagnosed with genetic conditions, it can be hard to have all your questions answered from a physician or other health care professional. Fortunately, there are many genetic condition support groups for both family members and individuals diagnosed with a genetic condition.
Genetic Condition Advocacy & Support
There are many reasons why a family and their loved one affected by a genetic condition might benefit from a support or advocacy group. Some may want to find others who are affected by the same genetic condition. It can be important to have someone to relate to on an emotional level as well as discuss other areas of their lives that may be affected. In addition, support and advocacy groups may be able to provide additional medical information, treatment options, current research, or even financial aid resources. Many of these support or advocacy groups are nonprofit groups or public charities that are interested in providing as much help to patients as possible.
It is important to find the right type of support group that would fit a family and their loved one’s needs. Support groups can be found most often online through Facebook, blogs, listservs, Yahoo groups and Twitter chats. There is a lot of information that can be found through a group’s website, such as resources, lists of doctors and clinics that specialize in the specific genetic condition, registries to help collect data for individuals with the same genetic condition, and research and clinical trials. When evaluating a support and advocacy group, it’s important to make sure the group has current and helpful information. It also may be important to look at who is running the group. For example, leaders of the support group may have the genetic condition themselves or family members affected by that genetic condition.
For example, an individual is newly diagnosed with Prader-Willi syndrome, a genetic condition caused by an abnormality on chromosome 15. This condition can cause small stature, early-onset childhood obesity, and intellectual disability. When searching online for Prader-Willi syndrome, one of the first resources found is the Prader-Willi Syndrome Association USA. Their website has many resources, providers, trials, etc. In addition, rarediseases.org lists additional genetic condition support groups and clinical trials for those looking for additional details.
Get Additional Support for Your Genetic Condition
For those newly diagnosed with a genetic condition, if possible, it can be helpful to meet with a genetic counselor. A genetic counselor will discuss the genetic condition, possible inheritance patterns and family history, and review the genetics of the condition. In addition, a genetic counselor can provide resources including clinical trials and support groups. A genetic counselor often works with rare genetic conditions and can see multiple patients with the same condition. They can be familiar with support and advocacy groups that are helpful and effective.
If you are interested in discussing your genetic condition with a genetic counselor, or suspect you have a genetic condition, please contact AT-GC to meet with a genetic counselor.