RARE DISEASES How to cope

Disbelief and devastation are what most people feel when diagnosed with a life-threatening disease. This is especially true when the disease is rare. The National Organization of Rare Diseases says one in 10 Americans is diagnosed with a rare disease, each of which affects fewer than 200,000 people. Some practical advice on how to cope with a rare disease:
Educate yourself. Researching a disease and treatment options can help you and your family make important health decisions. Work with your doctor to understand what you find from outside sources so you can find a treatment plan that is right for you.
Keep good records. You and your family will receive a great deal of information from your doctors. Use a notebook to keep track of medical information and bring it to doctor appointments.
Notebook suggestions. Before appointments, think about questions you want the doctor to answer. Write them down and highlight the main issues you want to discuss. If possible, send a list of questions in advance, and record the answers in your notebook.
Get support. Make a list of all friends and family who might assist you. Contact an association to find a network outside of your family.
Know your rights. For instance, the Family and Medical Leave Act requires an employer with 50 or more employees in a 75-mile radius to provide up to 12 weeks of unpaid job-protected leave for family members who need time off for their own serious illness or to care for a seriously ill family member.
Take each day as it comes. It is best to gracefully accept the things you are not able to do. Remember the past with warm feelings, but try not to live in it.
Keep a positive outlook. A rare disease will alter your life, but many affected by illness look at their life as a challenge; many patients have discovered that the whole experience makes them be stronger and enjoy life.
XSource: Aplastic Anemia & amp; Myelodysplastic Syndromes International Foundation