It was like the child's game of hot potato: the potato quickly gets passed around in a circle, and when the song is over, you hope that you're not the one left holding it. These doctors were passing me around from one specialist to another, back and forth to each other, all the while hoping that when the "song ended," they wouldn't be the ones stuck with me. One hospital and group of doctors actually refused to work with me anymore because I was too difficult and they didn't want to end up stuck with me. They were irrationally angry with me because what they were doing just wasn't working.
This was extremely disheartening. I felt helpless, scared, and alone. There was no one to advocate for me, and no one was listening.
There is a project called Rare Patient Voice. They do surveys and interviews for people with rare diseases about their medical care, quality, and services. This is not just for people who have the condition, but also for their caregivers as well. Each time you fill out a questionnaire or survey, you get a bit of financial compensation as well. When you sign up, you also get a $5 gift card for Amazon, as does the person who referred you.
These surveys pay well. Recently, Ulcerative Colitis patients earned $250 cash (well, a check) for completing one survey. I personally
The information from these surveys is used to improve the healthcare systems. They work with pharmaceutical manufacturers, advocacy groups and charitable organizations, in order to change healthcare one patient at a time.
I am passing this along, not just because of the gift cards, but also because after all of my experiences with the medical community in the last
When you first sign up, you get a $10 Amazon gift card. (Note: They now give $5 gift cards instead.) Then anyone who signs up and puts your name as a referral, you both get another $10 gift card. I got $20 because I signed up and then my husband signed up under me as my caregiver. I have taken several surveys, as well as phone interviews and have been compensated well: the most was $150 for a one hour phone conversation about a picture I drew depicting my life's journey! I also have not received any spam or been contacted inappropriately through this.
So I wanted to pass this on to you and invite you to sign up. Even if nothing comes from the surveys themselves, at least you get a free $10 gift card if you qualify. I haven't gotten any spam, but if that is something you are worried about, you can set up a free second email address and use that. That's what I did - I also use that email address for Viewpoints.com and Swagbucks.com, through which in the last year I've gotten close to $300 in free Amazon gift cards - if you're interested in that, ask me about it. (To sign up for Swagbucks, please use THIS LINK HERE)
SOME of the MANY diseases that qualify as "rare" are:
Multiple Sclerosis (MS)
Sickle Cell Disease
Pulmonary Arterial Hypertension (PAH)
Waldenstrom’s Macroglobulinemia (WM)
Duchenne Muscular Dystrophy
Crohn's Disease/Ulcerative Colitis
If you think that either you or the person you care for has something that qualifies as rare, you can apply and then explain why you think you qualify. There are so many more conditions out there that are more rare than those listed here.
If you do decide to sign up, please make sure to put Tiffany Thomas with an email address of firstname.lastname@example.org as your referral so I can get credit for it. You sign up at https://www.rarepatientvoice.com/sign-up/
Remember, this is about having a voice. A voice for those who are to ill to speak for themselves.