Many times common symptoms hide underlying rare diseases, leading to misdiagnosis and improper treatment at a later stage
Almost half of rare diseases do not have a specific foundation funding or advocating for the disease.
Spreading awareness about rare diseases can help contribute to increased public knowledge, support for clinical trials and scientific research, and development of new diagnostic and treatment procedures.
80% of rare diseases have genetic origins
Rare diseases case 35% of deaths in the first year of life in infants
Those fighting rare diseases also face high cost of healthcare that requires visits to specialists and uncommon procedures that are not always covered by insurance.
95% of rare diseases have NO FDA approved drug treatment
Half of people diagnosed with rare diseases are children.
Long over-due update -
Sorry, Its been so very long!!
Its been some rough times and been some great times this past year.
We have had some miracles and we have had some disappointments.
We have lost a great friend named Bernie that broke our hearts.
We had three births last year, Lizzy had a new baby brother and a new cousin born 6 days later.
We had a terrible flood in December and my son in law and his best friend almost lost theirlives trying to get my daughter Dawn and her family out of their flooded home after the levy broke on lake they live,
My dad had been very ill and a terrible time at one nursing home and got him into another.
Makes you wonder how we got through it all. The answer... faith and the love of family.
Just wonder sometimes what will happen to our family when I am gone. Who will fight for the the rights we deserve? I take it upon myself to make sure everything is okay.
Dealing with my dad has been the hardest. One day he is thankful for me being around and the next just a ripping on me for being involved. Does he want me there? Does he really mean those things he says yo me? Is he just in pain or does he really mean it. He gets Dementia when he is sick or in pain sometimes. That is so hard to watch.The hardest part is his incontinence. Is just plan sad. Is getting old a blessing? I am his caregiver too when I see him besides Lizzy's Its so hard at times and emotional.
I want to be strong and able to function when I am his age. How do we ready ourselves for old age?
Lizzy doing well. Turning into a young woman. She has lost some strength but working on ways to help her get that back. Not bad just a few things causing her difficulty. She is too honest, too mouthy and one of my precious gifts. I need to be around to help her as long as I am able.
Just wish I could stop the age clock for all of us and just chill for a few years!! Need to get caught up with just daily things I have missed since so many things have went on this past year.
Lizzy and her new brother!!
"We believe in miracle because we live with one!! "
www.our-sma-angels.com/elizabeth
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