Fibrous Dysplasia​

Fibrous dysplasia is a rare skeletal disorder in which fibrous tissues grow in place of ​a normal bone. This happens when the bone-forming cells do not mature and produce excessive fibrous tissues, which leads to weakened bones, bone deformities and fracture. Fibrous dysplasia normally affects a single bone, usually the long bone in the arms and legs or the skull. 

The disorder develops after conception, during foetal development, due to gene mutation that affects the bone-producing cells. This implies that fibrous dysplasia is not inherited from your parents and cannot be passed onto your children.

Fibrous dysplasia is diagnosed during the early years and is present throughout life. Gender, ethnicity, environmental exposure, race, and geographical location have no influence on the disorder. It can occur in anyone.  ​

Mild cases of fibrous dysplasia might not present any signs and symptoms. If the disease is severe it can cause certain symptoms including:

  • Pain in bone

  • Bone deformities

  • Fractures

  • Nerve entrapment

Symptoms due to specific location of the affected bone involve:

  • Limping due to variation in length​s of the different legs 

  • Chronic sinus congestion if the sinus bones are affected

Fibrous dysplasia can occur alone or as part of another disease called the McCune-Albright Syndrome which can cause additional symptoms including:

  • Early onset of puberty

  • Thyroid gland problems (hyperthyroidism)

  • Light brown spots on skin​​

You can schedule a visit with our doctors from the Musculoskeletal and Sports Medicine Service Line at The Aga Khan University Hospital, in case you notice the aforementioned symptoms. Schedule an appointment imm​ediately if you or your child develops bone pain that:

  • Increases when you lift weight

  • Disrupts sleep

  • Persist and doesn’t go away with rest

  • Causes a limp​​

Your time with your doctor maybe limited, so make sure to prepare for your visit beforehand. Here are some tips t​o help get you started.​

Mild cases of fibrous dysplasia may be detected by chance when you have an X-ray scan for other reasons. If your disorder poses signs and symptoms, your doctor may be able to offer a diagnosis on the basis of a physical exam and X-rays scan of the affected bone.

For further confirmation you may be asked to undergo additional tests including:

  • Computerized Tomography (CT) or Magnetic Resonance Imaging (MRI) scan to determine the extent of the disorder

  • Bone scan in which a radioactive material (radiotracer) will be injected in the body which travels to the bones most affected by the disease. The radiotracer emits little bits of radiation which is detected by the camera as it scans the body

  • Biopsy in which a hollow needle will be used to extract a small sample of the affected bone to be studied in the laboratory​

If you have discovered your disorder incidentally and it is not causing any symptoms, there is a slim chance that any complications, such as bone deformity or fracture, will arise in the future. It is still a good practice to schedule regular X-ray scans, after your doctor’s consultation to monitor your disorder.

Unfortunately fibrous dysplasia has no cure. Treatments are prescribed for severe cases to alleviate the signs and symptom. These include:

  • Osteoporosis medications to strengthen the affected bones, hence reducing pain and the risk of fracture

  • Surgery to:

    • Correct a deformity

    • Treat a fracture

    • Correct difference in limb lengths

    • Remove a bone lesion causing you difficulty

    • Alleviate pressure on a nerve​​

The Aga Khan University Hospital offers various support services to help with managing or recovering from the disease or condition. These include but are not limited to nutrition, physiotherapy, rehabilitation, specialized clinics and some patient support groups. Your doctor or nurse will advise you accordingly.

The Aga Khan University Hospital offers financial assistance to those who are in need and fulfil the eligibility criteria. For further information, you can contact the Patient Welfare Department. You can find the contact number of the Patient Welfare Department in the ‘Important Numbers’ section on the website homepage.

The financial counselling staff is available during office hours, at the main PBSD (Patient Business Services Department), to answer your financial queries on treatments’ costs and authorize admissions on partial deposit as per hospital policies allow. The financial counsellor in the emergency room is open 24/7. You can find the contact number of the Patient Business Services in the ‘Important Numbers’ section on the website homepage​

Your doctor and or nurse will give you specific instructions about the prescribed medication. Please ensure that you take or use the prescribed medicine as advised. It can be dangerous to your health if you self-prescribe. Please inform the doctor or nurse beforehand if you have experienced any adverse reactions to any medications in the past. If you experience any symptoms of drug poisoning, overdose or severe reaction please contact the Pharmacy Service at The Aga Khan University Hospital immediately. You can find the contact number of the Pharmacy Services in the ‘Important Numbers’ section on the website homepage

The information provided on our website is for educational purposes and not intended to be a substitute for medical advice, diagnosis or treatment. You should always seek the advice of your doctor or other healthcare professional provider.