Sturge-Weber Syndrome

#RareDisease

Life really sucks when despite your best efforts 2 b positive and combat the downside challenges, life proceeds forwards with it’s downward spiraling course !infact it can b downright awful when especially the ones who r supposed to love u the most don’t have a clue as to what u deal with daily.And even though u try to convey your deepest and
Innermost thoughts 2 them,it’s 2 no avail that you do so ;as it all goes right over their heads.It’s a road traveled almost alone.God gives u the strength to carry on with strength beyond what is normal but u still have a very heavy load to carry when you have a genetic disorder called mitochondrial myopathy and Lyme disease with fibromyalgia added to the mix and Asthma and having suffered at the hands of surgeons more than ten times....need I say more? Difficult does not even closely or remotely describe this living nightmare called life!Shame in those who sit in judgement of those like myself who suffer in silence.May God bless those who take a moment from their desperate busy lives to briefly show some compassion and empathy!After all nobody wants your sympathy just your understanding and a little kindness!😂😃😜😄

I can't say how many times I have come home from the hospital with paperwork that says "Your child has Sturge Weber Syndrome." I can't tell people how often a medical professional has to look up what Sturge Weber Syndrome is. I am frustrated by the fact that the "specialists" who actually deal with SWS only deal with kids, studies are for kids and the condition is treated in kids, not adults. What is seen as a "corrective procedure" for the same exact condition in someone under 18 is seen as "cosmetic procedure" over 18.

Do we say that someone no longer has Down's Syndrome or any other gene based birth defect after 18? Do we stop treating them comprehensively because of a birthday? If not then why is SWS treated so? Our condition can become worse with age in some cases so we need assistance however, instead of having a single doctor familiar with our condition we have must find a collection of doctors who may or may not work together and be familiar with our condition. It becomes a merry-go-round of doctor’s visits. The treatments become a collection of calls and at times expensive repetitious tests between doctors which delay possibly getting better.
Funny thing is no one is addressing the fact that as the children with SWS age this is going to become an increasing issue. If you dare move from your original location, your pediatrician drops your child or gets better enough to be independent enough to live alone and on their own insurance they will be forced into their own nightmare maze of doctors and medical care.
So how do we fix this How do future generations avoid this difficulty No one deserves this kind of neglect ignorance and frustration. I call upon the advocates and parents to help their kids to help them grow into independent adults who can have a life. They may be able to do it to have a college degree have a family and child a job. I have done it with type 2 SWS and regret nothing. Advocate PLEASE. #swsadults

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