Guidebook Home

Table of Contents

Preface

Introductory Comments

General Questions About FOP

Genetics of FOP

How FOP Affects the Body

Care and Treatment

Activities

Feelings About FOP

Helpful Addresses

Family Resources

Ideas for Independence

Medical Articles

Acknowledgments and Contributions

Activities

Are any activities helpful in maintaining joint movement?
In general, physical therapy for people who have FOP is not recommended, since stretching of the soft tissues around a joint can lead to a painful flare-up. Joints should never be passively stretched or moved in people who have FOP. Active range of motion should be encouraged, but an individual who has FOP is the best judge as to which movements are comfortable, and how much movement can occur with comfort. If physical therapy involves active assisted range of motion, it must be carried out with extreme caution. It is best to avoid the rigorous routines of physical therapy and instead to concentrate on movements that are comfortable. Remember, it may not take much to provoke an FOP flare-up.

Swimming is a good activity and enjoyable for many. The warm water may help an individual feel better, particularly during flare-ups. It is easier to move in the water than on land. One does not have to swim to obtain the benefits of warm water therapy. Simply being in the warm water may make one feel better and ease the discomfort. If a whirlpool is used for recreation, it should be used on a gentle cycle so that it does not aggravate the FOP.

 What physical activities should be avoided?
Anyone who has FOP should avoid activities where the likelihood of falling is high (running, contact sports, etc.). People who have FOP may have an increased tendency to fall due to impairment of balance from stiff joints. If a person who has FOP begins to fall, it is less likely that s/he will be able to break the fall. See "Catastrophic Falls and People with FOP" for more information. However, given FOP's progressive nature, let your child take advantage of the things that s/he physically is able to do. It is important not to isolate your child from the joys of life or the socialization with friends. In other words, don't be so afraid that your child will get hurt that you and your child forget that trying new things and having fun doing so is an important part of life. Children with FOP also can make modifications to conventional games which make them less dangerous and/or easier to play. Special Olympics provides an opportunity for physically disabled children to participate competitively.

Is bicycle riding off-limits?
Balancing on two wheels is not an easy feat; most people fall down when they are learning to ride a bicycle. Since falls can cause FOP flare-ups, it is better to avoid circumstances where your child is likely to fall. However, special bicycles exist which make it possible to ride without as much fear of falling. These bicycles often can be adapted for the special needs of your child: hand controls can be added, gears can be installed to make going uphill easier, etc. They come in a variety of styles (reclining bicycles, three-wheelers, etc) and sizes. If you would like additional information, please contact the International FOP Association. Anyone who rides a bicycle should wear a helmet to protect the head during a fall.

 Can people with FOP attend school? Is it necessary for them to attend a special class?
FOP is a disorder of the body's connective tissue. It causes extra bone to form; it does not affect the mind. Most people who have FOP have finished high school and many have graduated from college and professional schools. Children who have FOP do not need a special class, although they may need special assistance. As FOP affects each person differently, some children may require special accommodations, while others may not need any special treatment. Accommodations may be small or great depending on an individual's needs. In some cases, simply allowing a student to leave class early in order to avoid crowded halls, asking someone to carry books from class to class, or sitting a student in front where a teacher can more easily see a partially raised hand can contribute to an enriching learning experience. Other students may require special desks, special transportation, physically accessible facilities, teacher's aides, or in special circumstances home schooling. Needs may increase as the disease progresses. In the United States, schools are required by law to make such accommodations when needed, and many other countries have similar provisions. Parents should inquire in their community about the special provisions and accommodations that can be made for their child. Feel free to contact the IFOPA for advice on this important subject.

 What types of work do people with FOP do?
Some have their own businesses. Some are bankers, hotel managers or secretaries. Others are artists, teachers, actors, travel agents, lawyers, or computer programmers. Some work out of their homes and others work part time. Individuals who have FOP learn what interests them and adapt their careers to their lifestyles.

 What hobbies do people with FOP enjoy?
People with FOP are just like anyone else and their hobbies reflect that. FOP does not stop people from enjoying the things that interest them. Some of these hobbies include reading, sewing, stamp collecting, making origami, watching movies, playing Nintendo, traveling, playing checkers or chess, drawing or painting, and computers. These are just a few examples of hobbies that members of the FOP community enjoy.

How can I help my child cope with things that s/he is not able to do?
Your child will need special help with many activities that those without FOP can do themselves. However, your child may be able to do certain things that others without FOP cannot do. Focus on those things that make him/her special. You may be surprised -- probably more so than your child -- at what s/he is able to do with limited mobility. Children with FOP often find a way of doing the things that they really want to do regardless of their limitations, whether that involves basic skills that most people take for granted, such as dressing oneself, or something enjoyable like playing a musical instrument.

As there will be certain things that your child is unable to do, make sure that your child knows that it is okay to ask for help if needed. Make sure that s/he understands that all people have special talents and personal limitations.

 Is there any equipment that a person with FOP can use to become more independent?
There is a tool called a grabber that will help pick things up, essentially extending the arm reach of a person with FOP. Many people who have trouble bending also use it. Many people with FOP have made or adapted their own tools, such as eating utensils with long handles, toothbrushes, hairbrushes, bathing tools and toileting aids. Your doctor can also refer your child to an occupational therapist, a professional who can help custom-design or obtain tools to help make activities of daily living easier. The IFOPA's booklet Aids for Independent Living also provides important information about equipment that has helped other people who have FOP. See Ideas for Independence for more information on available resources.

 A HANDY LIST OF THINGS TO AVOID

• Surgery to remove extra bone
• Injections into the muscle
• Injections for dental procedures
• Manipulation of joints
• Aggressive physical therapy
• Falls and injuries
• Contact Sports
• Tight clothing, hard buckles or buttons, tight elastic, straps or body braces (i.e. to improve posture), tight shoes or shoe laces, any prolonged pressure on the body (This may be a more of a problem for some people with FOP than others.)