Tips for parents who have a child with PRS
1) Stay calm!!!!! I know this is hard but you must do this for your child's sake.
2) Find the right doctor even if you have to travel. Contact NORD and they can help.
3) Call your insurance company and they also can direct you to doctor's who are
listed with their network.
4) Do not change your daily family routine. This is so important. DO NOT TREAT
YOUR child different than your other siblings.
5) Join a support group for parents like you. The Romberg Connection is the best
and it helped me and my family get through the toughest times.
6) Keep the matter private. Make sure you only discuss the situation with people you
trust. There are people who may spread vicious gossip and need I say more,,,,,
7) Keep your child active aka sports, after school activities and socially.
8) Do not take family photos for a while. This was the most disturbing for me, when I
saw my face in photo's I couldn't deal with it.
9) Find cosmetics that conceal some of the facial damage. Sephora has wonderful
new products that I still use. Bare Minerals powder make-up is wonderful . It looks
so natural and does wonders,
10} Angel faces is another support group dedicated to helping young girls with facial
flaws. They also offer so much hope and advice.
11) REMEMBER..... there are many new cosmetic procedures your child can have to
correct their face.
12) SSD is now available for older patients and care-givers who had to stop working
as a result of PRS.
13) Support and advocate for PRS and all Rare Diseases. Many groups have monthly
newsletters that have up to date information,
14) Contact me.at cklein2794hotmail.com anyttime and I will personally listen to anything on your mind. I am not a professional, and will not offer medical advice.
But I can be a friend with the strictest confidence.
I have walked and still walk in PRS patient's shoes as a child and now as a parent.
I will be walking down this road my whole life.
I no longer walk alone.
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