What techniques or tips can be introduced into someone’s day-to-day routine, from a young age, to manage living a normal life with a rare autoinflammatory condition?
Posted on: April 26, 2017

Daily monitoring of fevers or attacks

When attacks or fevers occur regularly, they can become less difficult to anticipate. It is important to monitor your attacks in order to help identify and recognise triggers and initial symptoms – one way of doing this is to create a calendar/diary that is completed on a daily basis with activities and habits as well as well-being and health.

This type of written information on the burden of Systemic Autoinflammatory Diseases (SAID) is really important for documentation and very useful for helping healthcare professionals and treating physicians provide the best care.

Also, introducing small measures like this daily calendar/diary allows people and parents /caregivers to learn more about how to deal with attacks, including different options for management such as medications and complementary care; relaxation, hypnosis etc. For parents, monitoring attacks will help to improve the way they deal with personal emotions too, such as guilt and stress.

Patients should always carry with them an emergency protocol, written by their treating physician, like this one for FMF: https://www.orpha.net/data/patho/Emg/Int/fr/MaladiePeriodique_FR_fr_EMG_ORPHA342.pdf

Making special arrangements
Arrangements can be made at school between families, teachers and the treating physician to explain why some days may be left from school, adapt daily activities, support medication intake (if necessary) and to have an accurate care plan in place in case of emergency.

Considerations for travelling

  • Breaking up long journeys and choosing to fly during the day can help you to avoid jet lag and fatigue for long haul flights.
  • Talk to your physician before you travel to see if any change of dosage of any medication is required.
  • It’s also important to travel with warm clothes to avoid instances of excessive exposure to cold environments.
  • Particularly for FMF, during long haul flights, requesting an aisle seat or the first row will help you to stand up and walk around regularly to avoid limb pain and swelling. If you are travelling with an injectable substance, ask your doctor to provide you with a certificate indicating the reason why, the quantity and any specific needs for refrigeration etc.
  • Another tip when travelling is to carry a dedicated box that contains your medicines and all your medical documents so that you have everything together to access easily.

Finally, remember to check the destination hotel and accommodation details before making any bookings; you can complete a quick search online to make sure your hotel has all the necessary comforts and requirements that you need.