Travel for McCune-Albright Syndrome

McCune-Albright syndrome is an extremely rare disorder that affects the bones, skin and endocrine system. There are no specific treatments available for McCune-Albright syndrome. However, to get a doctor’s assistance you might have to travel for treatment of the symptoms through pharmaceutical agents. You might have to travel down to another city for the treatment of MAS as it is widely known as.

If you happen to travel for the treatment of McCune-Albright syndrome, you would have to carefully plan out your travel expenses and the itinerary. You have to decide for the treatment center and hotels to stay for the treatment of McCune-Albright syndrome related symptoms.

If you already know where you will be going for the treatment of McCune-Albright syndrome, or a consultation or a second opinion then click here to plan your travel. Otherwise, click here to get the information about facilities that specialize in McCune-Albright syndrome.

If you cannot afford travel for medical treatment, please consult our directory of charitable organizations that can help arrange no-cost transportation for you.

For more information: (links to the section below)

About McCune-Albright syndrome

McCune-Albright syndrome is a disorder that has the tendency to affect bones, skin and several hormone-producing (endocrine) tissues. McCune-Albright syndrome consist minimum of the following two qualities out of three:

  • polyostotic fibrous dysplasia (PFD)
  • café-au-lait skin pigmentation
  • autonomous endocrine hyperfunction (eg, gonadotropin-independent precocious puberty

This complex genetic disorder may have other endocrine syndromes like hyperthyroidism, acromegaly, and Cushing syndrome. Mazabraud syndrome, which can also exist in association with MAS, involves the occurrence of myxomas and usually polyostotic fibrous dysplasia. People with McCune-Albright syndrome develop an abnormal scar-like tissue in their bones and this condition is known as polyostotic fibrous dysplasia. Instead of bones with tissue making leads to fractures, uneven growth, and deformity. When lesions transpire in the skull bones and jaw line, it can result in asymmetric or uneven growth of the face.

Asymmetry in the long bones can also cause uneven growth of leg bones that may cause limping. As is the case with quite a lot of genetic disorders, McCune-Albright syndrome can lead to abnormal curvature of the spine known as scoliosis. Bone lesions can become cancerous also in this situation, but this happens in less than 1 per cent of people with McCune-Albright syndrome.

In addition to bone abnormalities, affected individuals usually have light brown patches of skin called café-au-lait spots, which may be present from birth. Girls with this syndrome generally reach puberty at an early stage. The girls suffering from this syndrome usually reach menstruation by the age two. The Albright syndrome is generally caused by mosaicism for a mutation in a gene known as GNAS1 (Guanine Nucleotide binding protein, Alpha Stimulating activity polypeptide 1).

Where to go for MAS?

In USA there are various facilities that can offer treatment for McCune-Albright syndrome, if you have already determined your child’s symptoms from early stages. As there are more precautions and management rather than the treatment, quite many hospitals cater to the treatment of McCune-Albright syndrome.

The following health care facilities would help you largely deal with the diagnosis and treatment of the syndrome:

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The doctors at the hospital would make a case history of the patient and the family and help you recommending medicines and therapies for McCune-Albright syndrome. Many physicians who are not endocrinologists believe in the vital treatment of MAS and timelyrecommendation of the patient to an endocrinologist who is experienced in its management.

The endocrinologist, consecutively, presents other referrals (to an orthopedic surgeon or neurosurgeon) as the initial check-up indicates. An incisive primary care physician (a pediatrician or an internist, as according to the age of the patient) who will synchronize the diverse aspects of the patient’s care is also required. No procedures are on hand to put a stop to MAS; nevertheless, suitable care must be taken for fracture prevention in patients with severe polyostotic fibrous dysplasia (PFD).

The syndrome can be detected at birth if the baby is born with Café-au-lait spots. Or else, it would never be discovered until the child reaches puberty or starts to develop certain bone deformities. It is suggested that full endocrine studies should also be performed. Laboratory studies detect some common abnormalities like testicular or ovarian hyper function.

Your child’s doctor will perform a complete physical examination to check for cafe-au-lait spots and other symptoms of McCune-Albright syndrome. Also an X-ray and bone scan will be taken up to detect fibrous dysplasia is present and moreover blood tests are helpful in showcasing certain hormone levels, if are prominent.

Treatment of McCune-Albright Syndrome

Treatment for MAS depends upon the brutality and level of a person’s symptoms. Mostly, the health care providers provide medications for endocrine problems or recommend surgery for bone issues. A specific treatment is undertaken according to a child’s symptoms. As target specific treatments are provided to the people suffering from this syndrome. According to the symptoms, treatment can be of following types:

  • Drugs that hold back bone resorption
  • Correction of deformities and complications related to scoliosis
  • Physiotherapy to strengthen muscles affected by fibrous dysplasia lesions
  • For precocious puberty, hormone therapy is suggested
  • Hyperthyroidism is treated by drug therapy or a surgery or a mixture of both

Risks associated with McCune-Albright syndrome

McCune-Albright syndrome itself doesn’t have many risks associated to it. However, the other syndromes that are caused by MAS, they propose multiple jeopardizes in the case of a patient. Fibrous dysplasia lesions, a muscle affecting health concern can lead to fractures. Furthermore, the tendons and ligament take too much time to strengthen the torn up muscle.

Individuals may be at high risk of developing breast cancer or tumors of liver, bile duct or pancreas. Reports suggest that this risk is likely to occur in individuals with growth hormone excess that is the case in McCune-Albright syndrome. Also, in rare cases, thyroid and testicular cancer have been reported in adults with MAS.

MAS is a rare syndrome affecting every 1 person in every 100,000 million live births all over the world. In very severe rare cases, do the lesions convert into cancer. Although, there are not much risk factors associated with MAS as it is redeemed by random mutation within the zygote just after the fertilization.

Who can go for the treatment of McCune-Albright syndrome?

This is a hormonal genetic mutation. So, girls before the age of 8 and boys before the age of 9 reach their puberty that means that they become mature because of the early activation of ovaries and testicles. As we get to know of this syndrome during infancy itself, the treatments should be taken up safely during infancy period.

Every child would have a different set of treatment taken up as per their syndrome. Patients who respond to the early medications should continue their treatment till the age of 15-16. The patients have a normal life expectancy if they cross the age of 15 years without any complications.

The clinical presentation of MAS is highly uneven, depending on which of the various potential components of the syndrome are predominating. Radical signs include the following:

  • Precocious puberty (typically gonadotropin-independent) – This encompasses of breast enlargement, genital maturation (it depends with or without pubic hair growth), augmented height velocity, and macroorchidism
  • Café-au-lait pigmentation – The pigmentation comprises of body spots that are either light or dark brown colored and regularly displaying a segmental distribution, and recurrently outweighing on one side of the body without crossing the midline; these spots have to be separated from those distinctive of neurofibromatosis (NF)
  • PFD – Numerous pathologic fractures may be prominent in the initial stages of the history; in several cases, bony association is found to prevail clinically on one side; impending presenting elements that incorporates gait anomalies, visible bony deformities (including abnormal bone growths of the skull), bone pain, and joint stiffness with pain
  • Hyperthyroidism (rare without several other features of MAS also being present) – Findings take in consideration tachycardia, arrhythmias (mostly supraventricular), hypertension, hyperthermia, tremor, sleeplessness, weight loss, or (in infants) failure to thrive also are early signs of MAS in infantsIf your child is suffering from any of the above symptom then your child is suffering from Albright syndrome.You must consult a doctor & go for a good Medical facility for its treatment.If you want to travel for the Albright syndrome treatment or search for its treatment than you can use our services.