People often feel very overwhelmed when they first receive a diagnosis. Here are a few guidelines which may help put things into perspective and allow you to actively take control of your health.
Education is Key: Read and learn as much as you can about your diagnosis. Knowledge is power, but be careful not to dwell on the worst case scenario. Most people with mast cell disease lead very fulfilling lives once they learn to control their illness.
Diagnosis is Just the Beginning: After diagnosis, it will take time for your treatment protocol to take effect. This treatment protocol may have to be changed and tweaked a number of times before you see improvements to your health.
You may need to see other specialists before you understand the full extent of your diagnosis. Many physicians have never heard of mast cell disease or have very little experience with it. You will need to learn to be patient as it will take time for all aspects of your diagnosis and treatment to come together.
It Starts With You: You have a very large role to play in the management of your health. You will need to learn your triggers and symptoms and manage them accordingly. Your diet and exercise may change. There will be many changes, but most can be managed quite easily. Your symptoms may change frequently, sometimes even daily. Food, exercise and enviornmental factors you've tolerated in the past may cause symptoms today. You will need to become very in tune with your body and carefully manage your environment. This is a life long commitment - you will have to actively manage your disease throughout your life.
Find Support: Seek the support of others and lean on others for support.
Seek a physician in your region who has experience with mast cell disease. MSC keeps a list of physicians whom other patients have reported were helpful in their care.