While lupus only directly affects very few children, many more are living with the indirect impact as one of their family members (often the mother) deals with lupus.
The incidence rate of lupus in children is very low, with only about 5 in a million children affected. Lupus most typically appears between the ages of 15-44, but some children will have lupus from their early years. Pediatric lupus is identical to adult’s, and equally erratic with regards to the symptoms. Over time, many different symptoms might appear and disappear. For some, the symptoms will be obvious (skin rash, hair loss, ...), for others they will be less visible (kidney affection, lung involvement), and diagnosis will be substantially more difficult as most doctors will not suspect it could be lupus... it is so rare!
For children with lupus, aside from the direct disease and impact of the medication on their body, many other challenges will take place.
Having lupus can interfere with their schoolwork: lupus flares typically give no warning before hitting, and sometimes, treatment will require hospitalization. This will mean the need to reschedule homework or tests, frequent (unforeseen) absences from school, a need to rely on fellow students for getting up-to-date notes. Also, as some forms of lupus or the medications used to treat the disease can affect concentration or memory, some of the schoolwork can become difficult or nearly impossible.
In addition to their school life, children with lupus’ social lives can also be impacted. Lupus-triggered fatigue might prevent children from participating normally in fun or extracurricular activities, forcing them to take breaks or limit physical activities. And as sun exposure can trigger flares, they will have to miss out on that sitting out by the pool event scheduled end June...
But probably more important, the difficulties coming from lupus or medication-induced (cortisone) changes in appearance can impact a child’s self-esteem, and as a result, their social interactions. Just a few examples: lupus can cause skin rash, hair loss, swollen joints, ... and steroids can lead to weight gain, delayed growth, or acne. Each of these can represent an additional challenge for children, particularly teenagers, in their relationships with others.
For children whose mother or sister is living with lupus, challenges are numerous. Their family life will be impacted as everyone will somehow need to step up when Mother is sick. Even if mothers do their very best and go to great lengths to avoid any impact on their children, everyone will have to take on more responsibilities, accept more flexibility, and deal with fears and concerns faced with this unpredictable illness. The variety of symptoms and the fact that flares hit suddenly and unpredictably add an enormous emotional and material load to all family members, and children in particular.
If you want to donate for Lupus, you can either make a payment on LUPUS EUROPE ACCOUNT or make a donation to our national members organisation (info on their respective websites).
For more information about children and lupus, this web site provides a lot of information in many different languages: http://www.printo.it/pediatric-rheumatology/.