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Which advice would you give to someone who has just been diagnosed with Stickler syndrome?
Advice for the newly diagnosed with Stickler syndrome, written by people who have lived it. What they wish they had known on day one.
Get as much info as you can find and force your doctors to read it. Most have never heard of it, but they're too proud to admit they know nothing. Simple things like the fact that steroids increase your already high risk of glaucoma will get missed unless you are your own advocate.
Posted Mar 9, 2017 by Lara 1003
Stay calm
Posted Mar 9, 2017 by Agustin y Juan 1000
Here's my advice to a parent with a child with sticklers. Get a good Dr who actually knows what stickler syndrome is. Start with the Major cities. Get involved and find us advocates were here to help. It will seem like your child is going through hell but you the parent must remain calm and remember your baby will be ok.
Posted Mar 21, 2017 by Scott 1000
Realize your physical limitations and participate in sports or actives that are not as demanding, but can give you enjoyment.
Seek out hearing aid professionals if hearing impaired no mater the age. Seek out vision specialists, who are part of a teaching environment who are seeking ways to help with your vision.
I wish I had sought out hearing aids earlier in my life. I'm 56 years old.
Seek out hearing aid professionals if hearing impaired no mater the age. Seek out vision specialists, who are part of a teaching environment who are seeking ways to help with your vision.
I wish I had sought out hearing aids earlier in my life. I'm 56 years old.
Posted Nov 18, 2018 by Carl 1800
