A little over a week ago we sent our partners, especially those affected by Limb-girdle Muscular Dystrophy 1F and their family environment, information regarding the coronavirus crisis, with information that they told us from the Neuromuscular Pathology and Ataxias Group of The Faith of Valencia.

For patients with neuromuscular diseases, as in our case, the recommendations are similar to the recommendations aimed at the general population, although extreme prevention measures are like all patients with chronic diseases, remembering that for more detailed information you can consult the website of the Ministry of Health where complete and updated information is available for citizens:  https://www.mscbs.gob.es/profesionales/saludPublica/ccayes/alertasActual/nCov-China/home.htm</a>

Today we update this information with more details on these recommendations, as well as advice on the day-to-day life of the quarantine, although adding to the message of tranquility that doctors and specialists transmit, to avoid the complexity of the situation, try not to add more anxiety to that already caused by having to be confined at home.

These tips are transferable to other similar neuromuscular diseases, as well as to other rare diseases that suffer from, among other things, lung diseases, such as our case.

The information is not ours, but it is thanks to information from Italian authorities and the main associations of neuromuscular diseases, as well as other diseases in that country, where they suffer a more serious situation than ours and have taken even more precautions . Some associations such as the Duchenne and Becker Muscular Dystrophy Parent Project in Spain have translated this information and the text they have shared for the same purpose is the one attached below. In it, you will find among other things, also links to videos to do rehabilitation at home, for different ages and disease states:

 

  • It is recommended that the patient does not leave home. Any medical appointment can be canceled and / or postponed, if they are not extremely necessary. </ em >
  • It is recommended that people from outside our home be avoided. Ideally, keep this recommendation until the end of the health alert period .
  • As far as possible, it is recommended to prevent family members living with the patient from leaving the home. If necessary, it is important to move to getting home from clothes, plus hand washing before coming into contact with the patient wearing a mask and gloves.
  • In the event that any service by a person outside the home is essential , make sure that this person changes clothes or wears a clean gown, gloves and mask before coming into contact with the patient.
  • Suspension of outpatient physiotherapy sessions should be evaluated. We recommend consulting with each center. Home physical therapy should continue and should not be discontinued. We remind you of the links that we have published on our website, which can be useful for you to carry out the exercises and always wearing gloves and a mask:
  1. Respiratory physiotherapy in childhood
  2. Physiotherapy in childhood
  3. Physiotherapy in adolescents and adults
  4. Respiratory physiotherapy in adolescents and adults
  • If by necessity an external person or one of the family members who live with the patient enters the house, they must leave, it is necessary to carry out a cleaning routine of the main surfaces touched by the person who comes from the outside, with disinfectant or bleach and the garments with which he has been outdoors must be kept away from the patient.

How to wash your hands? 60 seconds are enough to prevent infection

  • In case of doubt about the specific clinical needs, contact your referring doctor or you can call the telephones enabled in each autonomous community. </ em>
  • If the patient uses ventilation equipment and suspects that the respiratory situation is becoming more complicated or that a family member has contracted the virus, call for information or attention.

 

Information telephone numbers:

These recommendations are for all family members. It is important that they continue to protect not only ourselves but our vulnerable family members.

It is important that we stay positive and continue to support each other.

Let’s be responsible for leaving this health alert behind.

2020-03-19T19:06:06+02:00 March 18th, 2020|

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