Families may feel a range of emotions after the diagnosis of a genetic condition. You may feel afraid of what is going to happen next. Or, you may have a sense of relief from learning what the cause of a medical problem is.
Talk to your healthcare provider
It is important to tell your primary care provider about a diagnosis. Talking to your healthcare provider will help the team of health professionals that are caring for you. Keeping your provider up to date on how you are feeling will help you, too.
People who are part of your healthcare team need to communicate with each other. This will help them to better manage and treat your condition. Let your primary care provider know all of the health professionals that you are seeing. This will allow your provider to connect with others on your healthcare team. Ask the offices of any specialists that you see to send your primary care provider a note following each visit. You will need to fill out a form so that your specialist can share this information with your regular provider.
After diagnosis you play an important role in your treatment.
Be sure to tell your healthcare provider about any changes in your medical condition. Your provider needs this information to give you the best care possible. If necessary, your primary care provider can refer you to a specialist to treat new symptoms.