Coping with your FMF diagnosis

Remember that FMF is a hereditary disease, and that genetics are beyond your control. Being well informed and taking good care of your physical and emotional health however can go a long way to helping you feel more in control of your life.

• Learn more about FMF

  Seek out knowledgeable professionals and literary resources to gain a better understanding of FMF. Discuss some of your concerns with someone who will be able to provide you with reliable information. Resource people can include: a general practitioner, a genetic counselor, or a pharmacist.

  Some questions you might have may include: How common is this disease? Are there any long-term complications of FMF? Could other members of my family be affected by this disease? Will my future generations be affected by FMF? How safe and effective is colchicine? How soon will the treatment start working? Do I need to make any lifestyle changes: diet, exercise, etc…?

  If you have a confirmed FMF diagnosis, other members of your family are at risk of being a carrier of the gene mutation, or of having the disease. We recommend you discuss this with your doctor and with your family.

  In order for you to have FMF, both of your parents must be carriers of the disease. Consequently, each of your siblings has a 25% chance of being unaffected by FMF (not a carrier); a 50% chance of being a carrier of FMF; and a 25% chance of having FMF. In certain populations where carrier rates for FMF are high, it is even possible for one or both of your parents to actually have the disease. If this is the case, the likelihood that your siblings will be affected by FMF increases accordingly.

  Being a carrier of FMF is not known to cause health problems. Note that the onset of the disease and the symptoms of the disease can vary from one FMF affected person to another, and even among members of the same family. It is even possible that an individual who has FMF does not show symptoms of the disease until later adulthood. In susceptible populations, amyloidosis can sometimes appear as the first manifestation of the disease, even in individuals with FMF who do not have any other symptoms.
  
  If you have a confirmed diagnosis of FMF and your spouse is not a carrier of the disease, each of your children will automatically be carriers of the disease. If your children were to subsequently have children with other carriers, then there is a risk that your grandchildren could be affected with FMF.
  
  If you have FMF and your spouse is a carrier of FMF, each of your children has a 50% chance of being a carrier for the disease, and 50% chance of having the disease.
  
  Of course, if you and your spouse both have FMF, each of your children will be affected by FMF.

  See the section entitled What is FMF? and other sections of this web site for more information.

• Express yourself

  Take the time to share your thoughts and feelings

  There could be a whole range of thoughts and feelings that you may experience following your diagnosis. It may be helpful to share these with supportive family members and friends, or with an online FMF support group.

  Some thoughts you have may include: How will this diagnosis change my day to day life? How will I explain this disease to people? How will this diagnosis impact my relationships with important people in my life? …

  Some feelings you may have can range from feeling: fearful, numb, overwhelmed, anxious, angry, sad, guilty, bitter, isolated to feeling relieved, hopeful, happy, understood, supported, secure, empowered, etc…

  Try keeping a journal, or express yourself artistically as a means of expressing the thoughts and feelings you are experiencing, and making sense of them. Seek out personal counseling if you feel that it is warranted.

• Take care of your health

  Manage your energy wisely - Avoid fatigue by not overexerting yourself. Learn what your limits are and respect them. Prioritize your responsibilities and set up realistic goals for yourself.

  Get enough sleep – Sleep restores the body and the mind, and contributes to your ability to deal effectively with your life stressors.

  Exercise regularly – Engaging in regular physical activity will not only keep your body fit but will also produce a release of endorphins that will improve your mood, and help you manage your stress better. Discuss with your doctor what types of exercise are best suited to you.

  Eat well balanced meals – Eating healthy foods will help you feel more energized and keep you in better spirits. Anecdotal evidence indicates that for some individuals affected by FMF, certain foods can trigger an attack (e.g. foods high in caffeine, nuts…). Monitor the foods you eat preceding an attack, and see if limiting them helps reduce your attacks.

  Try relaxation breathing exercises or meditation or yoga.

  Set aside time for your social activities, and hobbies.

  Take your medication regularly - There is no known cure for FMF, but it is treatable. Colchicine is the medication considered most effective in reducing the intensity and frequency of attacks. Ninety percent of individuals taking colchicine will benefit from an improvement or even complete relief of their FMF symptoms.

  Although colchicine can cause some side effects Click here for info on colchicine’s side effects, sticking to your medication regiment is important not only to manage your FMF symptoms, but also to prevent amyloidosis (if you are among the individuals who carry a particular FMF mutation that confers a risk of developing this complication).

  Some individuals can become lactose intolerant while taking colchicine and may have to make some substitutions in their diet. Speak to your doctor if you have any concerns about this. In some individuals, colchicine may also affect the absorption other medications. Ask your doctor to make sure that other medications you are taking are not known to interact with colchicine. For more information, refer to the links section of our site.

  For some people affected by FMF, attacks can be triggered by: emotional stress, over-exertion, eating certain foods, or cold temperatures. Being aware of your triggers may help you limit your FMF attacks.

  For more information on stress management and relaxation techniques see:
  WebMD - on Stress Management
  

When somebody close to you has FMF

Seek out information about FMF. By being aware of the nature of FMF, and how it can affect your loved one, you are in a better position to offer the support and caring that he or she may require to better cope with the diagnosis. Being more informed will lessen some of the confusing feelings you each may be having.

Take time to process your own feelings and seek out support for yourself- This can be a confusing time for the individual receiving the diagnosis, but may also be one for you.

Be patient – Accept that it may take some time for your loved one to adapt to their new reality following the diagnosis. Understand that this is a natural process and that some days may be better than others.

Encourage your loved one to make healthy lifestyle choices that will help contribute to their overall health and well-being.

Show acceptance and understanding - As you learn more about FMF, you will understand that despite some lifestyle changes and proper adherence to a medication regiment; some FMF symptoms can still occur in some individuals.

For Parents:

Don’t blame yourself – genetics are beyond your control. Everyone is a carrier for at least 2-3 genetic conditions and you will also have passed lots of “good” genes onto your children.

Help your child understand his/her diagnosis, its implications and how to care for their health.

Inform your child’s school administration and teachers that he/she has FMF and create a plan for how they can manage your child’s FMF symptoms at school, and how your child can remain up to date with lessons covered during their absences.

Address questions and concerns that your unaffected children may have about the disease.

Seek out the support of other parents who are going through a similar experience to break the isolation you may feel. Link up with online groups that offer support and information sharing for individuals affected by FMF and their families. Seek out other families affected by FMF in your local community.