A common theme which often arises when chatting with moms and caretakers of rare disease patients, particularly paediatric patients, is the stigma attached to the word “disease” and the desire to create public awareness so their children don’t feel “defined” by the condition – well, no more defined than what the physical limitations already impose.
Many a rare disease mom has recounted a story of children at playgroups happily interacting with their peers, until the mention of their rare disease… the simple inference of illness activates a mom’s inborn, maternal instincts and the immediate reaction is to remove their child from the potentially ‘hazardous’ threat. Three toddlers are now sitting on their mothers hips at as great a distance from said threat as possible without appearing ‘obvious’. We can’t blame you – from before any of us can remember we’re taught to wash our hands to prevent spread of germs, sterilise every possible item which comes in contact with our babies and to quarantine anyone who is sick as much as possible to prevent an outbreak. Bottom line – it’s a basic human desire to remain healthy… so the natural reaction is to try and protect oneself from anything that may be disease causing.
For almost all rare diseases though, there is no cure. For some, there is a registered treatment. For most, there are supportive therapies to make the symptoms as bearable as possible and the improvements as significant as possible. This said, if we were to keep rare disease patients hidden to appease society’s fear of illness, they would never make a public appearance. Yet with treatment and supportive care, these patients are able to actively contribute to society just as much as anyone else and often over-perform, through the pain and challenges, in an attempt to conform to the global definition of ‘normal’. Here’s a few things we want you to know:
It’s Not Contagious. 80% of rare conditions are inborn, genetic diseases which means it requires an alteration in the DNA during development to occur. They wont “catch it” from sharing toys and you don’t need to protect them from physical contact or being in close proximity. As rare moms, we also want our children to experience as normal a childhood as possible given the circumstances – joining playgroups even though we might be a few groups behind from a milestone perspective, going out to public restaurants and activity centres to stimulate growing minds and foster peer-to-peer interaction and allowing kids to play together and learn the basics like sharing, team work and cooperation.
It’s ok if your child asks Questions. In fact, its encouraged – rather instil empathy than ignorance. Don’t feel ashamed or embarrassed if your child asks about visible physical deformities or disabilities – children have an innocent curiosity – it’s how they learn and your reaction determines how they respond. It’s the overt avoidance of the topic or stern command not to be rude which instills a perception in young minds that it’s something negative or a topic that should be ignored. For most rare kids, they’re fully aware they’re different and instead of pretending they’re not, they’d rather own it and still be made to feel like they fit in regardless.
Some illnesses are actually not visible. Not all rare diseases present in the form of a physical handicap or visible deformity. Many diseases occur at cellular level and can affect basic metabolic and systemic processes resulting in lack of energy, lethargy, organ failure and other symptoms which aren’t visible to the naked eye. If we claim illness but our child looks healthy for the most part – it doesn’t make me the hypochondriac mom who unjustifiably fears the worst, nor does it mean my child can’t possibly have “the most serious version” of the illness – more likely than not, it means my child has become accustomed to living with a degree of pain, discomfort or inability which has become their “normal”. Kids are resilient.
Don’t Feel Guilt or Pity. Yes, we’re a little jealous of your “normal” child, and No we didn’t ask for this – we’ve been through the “Why Us” Debate numerous times and to be honest there is no answer – it wasn’t our fault and it wasn’t yours either. So don’t feel guilty about having a child without medical issues or for celebrating milestones and achievements ours may never reach. Don’t feel like you should downplay life events for our benefit or that you should tolerate poor behaviour from my child because he/she is sick and has a lot to deal with. We’re trying our hardest to create as normal a childhood as possible and that includes discipline, manners and respect.
Rare Diseases can be Life-Limiting. It’s a reality we have to face whether we like it or not. This means our priorities and dreams for our children may be different to yours. We may not place emphasis on schooling and grades – let’s be honest, we don’t know if they’ll live long enough to benefit from it. So if their preference lies in sport, or playing instruments we’ll embrace it wholeheartedly – it gives them something to live for, to strive toward and to escape the reality of their condition for just a few minutes. They deal with adult decisions and situations daily when it comes to their health, and whilst we embrace the maturity and resilience with which they face it most days, we also just want our babies to be babies – to play, to belly-laugh and just be free from restrictions and stigmas.
Wash you hands, a lot. Common colds and infections can be a death sentence for our little ones. So please be conscious of all the germs you carry. This is actually why we are eyeballing you out as your child approaches ours. We are secretely screening you for any noticeable infection markers. Should there be any, we will politely say that we can’t hang today, grab our kids and run like the wind- dont take offence. It is not because we don’t like you, or we don’t want to play, it’s simply because the simple cold for most kids quickly becomes hospitalization and months of health issues for ours.
Finally, we still like you. Whilst we don’t often take you up on the offer for playdates, glasses of wine or weekends away, it is still great to feel included, so please keep the invites coming.
If you would like any additional information on rare diseases, our organization and the work we do, please visit www.rarediseases.co.za.