Must I implement any special precautions when traveling and choosing a destination if my child has scleroderma? What recommendations must I put into practice when traveling by car? We speak with Doctor Paloma García de la Peña, head of the Rheumatology Department of HM Hospitals, who offers a series of recommendations for making our trips safer.
WHAT IS SCLERODERMA?
The Spanish Association of Scleroderma highlights that this is a "chronic autoimmune disease, included within rheumatic diseases. It is considered a rare disease due to its low prevalence". It is more frequent among women and usually appears in the third and fifth decade of life, though it may arise at any age, even in children.
ADVICE FOR TRAVELING THIS SUMMER
The first thing to bear in mind is what type of scleroderma our child has, whether it is systemic sclerosis (SS), limited scleroderma (LS) or diffuse.
If our child has the systemic type, we must consider the manifestations of the disease. SS is a highly heterogeneous disease and each patient is unique. Limited scleroderma, in general, is milder and treatment is usually focused on the skin.
Almost all of the patients have Raynaud's phenomenon and the first measure to implement is to be especially careful with changes in temperature. It is always preferable to travel to destinations at which the temperature is warm but not too hot and without major oscillations between day and night. It is always advisable to have gloves and socks handy wherever we go to protect the hands and feet. Avoid air conditioning that is too high; climate control is preferable.
When getting into the pool or the sea, avoid cold water. You can always take hand warmers with you.
Skin care is especially important. Avoid prolonged sun exposure and hydrate the skin copiously before and after exposure. This disease dries the skin, wherefore repeated swimming and sun baths even further increase its dryness. We must also bear in mind that, sometimes, this disease may cause hyperpigmentation which may also be intensified by the sun. Lotions with a high content of lanolin, glycerin and urea (Nivea, Neutrogena) are recommendable, applied several times daily and especially after the daily shower. We also suggest the use of aloe vera gel (100 percent), which may be alternated with other lotions.
Itchiness is common during the disease's initial phases, causing a child great unease, which may be relieved by using shower gels based on oats. Those cases that so require will use anti-itch drugs.
If the child has any pulmonary complications (interstitial lung disease and/or pulmonary hypertension) this must be considered when choosing a destination, with mountain areas being unadvisable (altitude >1500 meters).If oxygen therapy is required, parents must check that an adequate supply is available at the destination. If the mode of transport used is the plane, the airline must be informed of this.
If a child has digestive problems and difficulty with swallowing or is intolerant to certain foods, parents must also have foresight. If flying, inform the airline of special dietary requirements, or pack certain food items in your hand luggage. If staying at a hotel, also report this prior to arrival for its preparedness. We can also opt for an apartment-hotel to have the option of being able to cook meals as desired. It is always preferable to eat smaller meals more often.
It is also important to attempt to adopt anti-reflux mechanisms, such as raising the bed's headboard, also at the vacation place and avoid tight clothes, especially during the trip.
RECOMMENDATIONS FOR BEFORE AND DURING THE JOURNEY
One thing of critical importance is for parents to have a copy of the child's medical reports and medication at hand, especially when traveling abroad. Always take sufficient medication with you, rather than just the exact amount, in case anything unexpected comes up.
When the disease is more severe, it is advisable to find out which Hospitals are available at the destination and have with you an up-to-date Health Card and request the International Health Card, when applicable.
If traveling by plane, we should always take this with us instead of packing it with the luggage, in case the suit cases are lost. In addition to the medication, also take along a small "personalized first aid kit" adapted to each case (material for caring for ulcers, antibiotics for infections, material for respiratory physiotherapy, etc.).
If traveling by car on a long road trip, stop every two hours for the child to drink and remain sufficiently hydrated and to walk a little bit.
If the skin is quite affected, make sure that it does not rub against the seat belt to avoid causing lesions.
It is also critical to maintain a proper temperature in the car compartment and that the child is not exposed to a direct jet of cold air; climate controlled vehicles are better.