A message to parents on Rare Disease Day.

This post is for Rare Disease Day - 28 February each year.

From the website:

"The Rare Disease Day 2015 theme Living with a Rare Disease pays tribute to the millions and millions of parents, siblings, grandparents, spouses, aunts, uncles, cousins, and friends whose daily lives are impacted and who are living day-by-day, hand-in-hand with rare disease patients."

This is my letter to parents of children with Ichthyosis. Ichthyosis is a very rare condition - affecting 20 people per million. It's no wonder parents are not informed about the condition until their child has it. And subsequently, so often I see their words of desperation, and of guilt. I hope my letter will offer some advice, comfort and reassurance to them. And you can substitute any rare condition for Ichthyosis. This is just the condition I know. 

I have a lot to say about cures, which are often sought for rare diseases - and while I've omitted my thoughts from this letter, I have written about it for Daily Life.

And this letter is as much for my parents as it is to all the other parents out there. Much of the advice I wrote in my letter is based on my parents' positive behaviour.

Dear parents,

I know your world has been turned upside down with this diagnosis - the great unknown. It's a whole new world with ointments, infection risks, weight gain difficulties, pain and skin. So much skin.

Maybe you're grieving a life lost - and that's expected, that's ok. But a life hasn't been lost. That little life you have in your arms is a new challenge, but also a life full of happiness, fun and achievements to be celebrated. As an adult patient with Ichthyosis, I want to tell you that things will be hard. But things will be ok. Good or great in fact. And who knows what life will bring - for any of us - but I recommend taking things one day at a time.

Please never to blame yourself for your child's genetic condition. You don't need that added stress. They don't either. You probably didn't even know you carried the gene. Don't ever blame yourself. I have never blamed or resented my parents for passing on the gene. It's not something they could control. People ask me if I am angry at my parents - and I am always saddened by this question. No. They did the best they could when an unexpectedly unwell baby came into their lives.

Maybe your child's diagnosis was made sometime after birth? I guess life doesn't have to change or get harder with this diagnosis - because you and your children have not known any different, and this diagnosis is just a word. It's not defining or a curse. What it does mean for you is that you can get some treatments specific to the condition, which might be a big help.

People will stare and make comments. Sometimes their comments will be rude. Don't take these as a reflection on your child's appearance or on your parenting. They're a reflection on the person staring and making the comments. You can give them an explanation, but you don't even owe them that. It will be tiring, and you will get frustrated. But sometimes the curious (polite) encounters will spark up an interesting conversation, and maybe even be the start of a wonderful friendship.

If you are struggling with guilt or feeling overwhelmed with the daily treatment regime, see a counsellor - it's good to talk to someone.

And on the topic of talking to someone - emotional support is just as important as medical support for a condition like Ichthyosis. The feelings from isolation and bullying can be as painful as a skin infection. Ensure that you have a team of physical and mental health specialists - for your child and you.

Support groups are fantastic (and something that my parents and I never had until recently). But sometimes they can be overwhelming - full of comparisons of who has it worse, resentment for those who have it 'better', guilting others for their choices to have more children with Ichthyosis (or not),  and all sorts of recommendations. Don't fall into that trap - comparison is the thief of joy. Remember that a treatment that's working for one patient may not work for another, and so don't take treatment recommendations as gospel. Talk to your doctor before trying something new. And listen to other patients with the condition as much as you listen to other parents - after all, we've lived with it and know it firsthand. And never guilt others for our choices or happiness - we're all in this together.

Know that there's more to your child than their condition. They are, or will be, smart and funny and beautiful. I bet your little one is the best thing that happened to you. Encourage them to read widely and talk to lots of different people and to take every opportunity presented to them - even if it means they're (and you're) a little out of their comfort zone. Don't think it will be too hard or impossible because of their skin or the way people may react to it.

Consider the impact of your comments complaints about your child's skin, creams or lengthy care regime. While you might think it's insignificant parental complaining, your child may grow to become very self-conscious of the 'mess' they make because of their skin or creams left on surfaces, or the time you're taking to care for them. Be especially mindful of this if you're complaining online - that's part of their digital footprint too.

Be proud of your child, show them that you're proud, and show others that you're proud of them. That's the best gift that you can give them. When you show your child you're proud, you give them pride.

I wish you and your child all the best. And I thank my Mum and Dad for instilling these values, confidence and pride in me. You are ALL doing a great job.

Much love, 

Carly