LAURA: THERAPEUTIC AND REHABILITATIVE INDICATIONS IN BETA-SARCOGLICANOPATHIES

 

In the current state of scientific knowledge, there is no specific cure for patients with beta-sarcoglycan muscular dystrophy.

 

The following indications are used to maintain - as far as possible - a good quality of life for as long as possible and are similar to those of Duchenne patients.

 

Many research centers prescribe cortisone drugs to decrease muscle inflammation. The doses and type of medication (usually Flantadin) are prescribed based on the age and weight of the patient. They must always be accompanied by drugs that defend the gastric tissues and vitamins of the D group. However, some patients do not benefit from this treatment or have contraindications (usually of the gastric-intestinal type) that discourage their use.

 

For all Beta-sarcoglycans, the therapeutic indications concern the intake of vitamin C (1 g per day) and vitamin E (600mg per day) in alternate cycles of one month each, spaced by a month without any intake and of Creatine monohydrate (1 g per day - with plenty of liquids) every other day.

 

In case of mild cardiac difficulties, it is recommended to take Dilatrend in the ways and at the times indicated by the cardiologist, while training in air stacking with an AMBU balloon and the use of inexsufflator devices is always useful to prevent any respiratory crises due to diseases from cooling.

 

In order to maintain the muscular lengths and the articularity of the limbs and the spine, physiotherapy sessions are essential every two weeks, accompanied by the use of statics every other day. On the recommendation of the orthopedist - after the loss of walking ability - bilateral Achilles tendon lengthening surgery can be performed.

 

It is very important to follow the evolution of the disease annually with neurological, specialist (cardiological, pneumological, physiotherapy evaluation) and personalized visits to the patient.

 

We must never forget the psychological aspect that the disease has for the patient's entire family unit; adequate psychological support is essential.

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