Plan for the future

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Where To Start

After working with a medical team to understand the diagnosis and taking care of your short-term needs, the next important step is planning for the future. There are several things to do:

  • Get your long-term support structure in place. This might include family, friends, support groups, medical professionals, or others.
  • Identify your "medical home." This is the healthcare provider that will be the center of your medical team. The role of the medical home is to make sure that all healthcare team members have the same information and that you receive all necessary care. In many cases, your primary care provider will be the center of your healthcare team. For genetic conditions, sometimes a medical geneticist will act as the medical home or main coordinator of your care.
  • The National Center for Medical Home Implementation (NCMHI) is dedicated to making sure that all children and youth, especially children with special needs, have access to a medical home. Learn more at www.medicalhomeinfo.org
  • Talk to specialists. Your healthcare provider can give you a referral to other professionals who have special knowledge about your condition, or a part of your condition. You may need to see different specialists at different times throughout your life.
  • Think about insurance and financial planning. Some people worry about the added healthcare costs that may come with a diagnosis of a genetic condition. There are many resources that can help you along the way.
  • Continue to learn about the condition. After living with a genetic condition for a while, you will soon become an expert. Never stop learning about your condition. This is the best way to be your own advocate.

Emergency Preparedness

No one likes to think about the possibility of an emergency situation, but it is important to be prepared. Often emergency situations occur so quickly that it is difficult to think through the scenario and clearly communicate the information that medical providers need to know. One helpful tool is to create a wallet-size card with condition-specific information and guidelines that you or a family member can carry around and hand to medical professionals during a time of crisis. Some advocacy organizations may have already created something similar that can be used, so make sure to check with them about their specific emergency preparedness recommendations.