but you already knew that – I just had to grab your attention
The number one complaint you will hear from patients who suffered from being misdiagnosed or being undiagnosed is that nobody listened to them
Because they were “too rare”
These are the people who then had to hear these words, the diagnosis that shattered their entire world… Just much too late for it to count …
“There’s no cure, we can only manage the symptoms and pain ”
“With the limited information we have.. People live for about 1-5 years”
“it’s 1 in 5 million once it spreads, I’ve never seen it personally, you’re very rare!”
It’s Rare Disease Day
I thought that I would offer a different perspective – one that could explain what this day means better than anyone, and why it’s so important to share this message.
Today is rare disease day, they call them zebras.
Zebras are the last diseases that doctors look for. The obvious ones are called Horses, those are the ones the Doctors are used too. So they get to cure those on time.
I have a Zebra at home so it’s the one the doctors didn’t catch in time. She is my beautiful wife 26 years old she is what we call paleative.
My wish is that the doctors would of listened when she was telling them that her illness was back and did proper testing instead of blaming it on anxiety, it would of been treatable she would of had 1 thumor instead of 16 impossible to treat.
So please doctors I beg you to listen to your Zebras when they say they know their illness is back and don’t look at the ‘Horse’ if they are Zebras. Continue on treating them like Zebras.
If you have a Zebra in your family fight for them don’t let the doctors see them as Horses.
I’m very happy of how I’ve taken care of you since you were diagnosed butt I really regret the way I did not react before. If I would of known better it would of been different. I know it’s not just my fault but I still carry with me a lot of blame, I always think if I had known more back then I would have fought harder for you, if I just would have known there were more tests, I trusted in them and I shouldn’t have. I would have never taken no for an answer, we just didn’t know what more to do. We didn’t know what to research for, we didn’t know we had to. And I’m so Sorry baby😪
Now we are doing everything we didn’t know how to do back then, and it’s helping others. I’m so proud of you. You will help so many other people not feel the way we did that day. I love you so much!!
Thank you for reading!!!
This is what it’s all about, to hopefully help rare diseases like mine (pheochromocytoma) cancer become less of an unknown disease to all involved. Eventually making these misdiagnoses, and undiagnosed patients less of a problem.
Help us become less rare.
Help keep sharing the information.
Every day I struggle through my pain to write any little detail so that there will finally be information available – any information available to others about this rare disease. Explain what it is to participate in treatments, procedures, and rare trials real time…I patiently repeat myself as I explain what pheochromocytoma is over and over again to anyone and everyone.
All I ask is that you share my message further, just SHARE!
I have one common goal in mind… help make this disease less painful for the next person. Make this disease less of a struggle for the next family, less of a mystery for the next patient, more information available to the next medical team, and hopefully…
Whatever they can do to give us with more time, and better quality of life.
I know there’s no cure, but it would be really nice to not suffer so much while we’re waiting.
There’s one single day for thousands of rare diseases to become less rare and get the awareness, funding, and exposure they are looking for – all crammed into one 24 hour period. Why is that?
Are we less important than someone who has a different disease? Am I dying any differently?
This is why I need your help, today and everyday… but ESPECIALLY today, let’s make today count for all of us zebras.
Let’s make our February 28th 2017 Rare Disease Day worth it!
Share to become less rare !
Pheo VS Fabulous