FACTS BEFORE DIAGNOSIS
When facing a diagnosis of neurofibromatosis, there are things to do both before and after the diagnosis is made. One of the most important things to do before a definite diagnosis is made is to get both life and health insurance in place, because NF is one of those uninsurable disorders. When your child is born, you are often inundated with offers from various companies offering life insurance. It is important to get your child insured before a confirmation of NF is made. This at least guarantees your child some form of life insurance throughout his or her lifetime and you can honestly answer the questions because there is no confirmation of any tumor disease. Although it may feel morbid to you, it is going to be of great importance to your child later on in life.
“Hook Up” With Doctors
Both before and after NF is confirmed, it is important that you “hook up” with doctors who are knowledgeable about neurofibromatosis. Just having read one or two articles in a textbook doesn’t prepare your physician to deal with all the subtle ramifications of this disorder. If you can find a major medical center where the staff has a great deal of experience treating NF, you are better off. They may notice problems that other doctors with less experience may miss. Look for articles, read the newsletters, join a support group. Often, the information you get from other parents dealing with the same issues can provide you with knowledge and insight that you can then take back to your own doctors. Remember, others are dealing with the same things you are and you are not alone.
Get Involved With a Support Group
Many times, parents are afraid to investigate because they are afraid of what they might read or discover. Remember, knowledge is power. You are not only helping your child but yourself. No matter if it is your child, your partner, yourself or another family member dealing with NF, the more you know, the better able you are to deal with the situation. Get involved with a support group, make a list of questions to ask your doctors, go online to the various resources that are available at the national NF organizations. Help get continued funding by writing to your representatives in Congress, both in the House and the Senate. It is only though increasing their awareness of NF that we can continue in our battle against this disorder. We have made tremendous progress in the last 20 plus years in dealing with the ramifications of this disorder and unlocking the mysteries of neurofibromatosis. Together we can continue to make great strides. Don’t be afraid to take the steps to help both yourselves and the others in the greater NF community