Gastroparesis and Advocacy Awareness
Check out this podcast, in which I was a guest on earlier Thursday August 11, 2022. #gastroparesisawareness #PatientAdvocacy #socialhealthnetwork #rarepatientvoice #TPN
My name is Tonya. I am a chronic illness warrior and am passionate about advocacy. I love to share my story with anyone who will listen.
I have been featured on my local news station and interviewer for our newspaper.
I have numerous conditions such as Gastroparesis (g tube, port, gastric stimulator and on TPN) . I have Primary Immunodeficiency and infuse Hizentra. I have Ehlers Danlos, Autonomic Dysfunction and Mast Cell Activation Syndrome. I have Chronic EBV and had an Acquired Hemaphagocytosis due to being immunocompromised and catching Covid-19 earlier this year. I deal with migraines, hypotension and hypoglycemia as well.
I'm currently writing for a migraine site and volunteer as an Oley Ambassador.
My goal is to bring awareness of little known things about my conditions. I am always bringing new information to my doctors. They appreciate it.
I hope to learn from you all and hopefully, you'll gain insights from me.
This week, we’re talking about self-advocacy.
The topic this week is self-advocacy. Self-advocacy is the capability of expressing and advocating for your own needs and desires so that you can enjoy the same options, opportunities, and rights as everyone else.
As a person with diabetes, that means expressing the need to and advocating:
- the choice to choose a diabetes management treatment that works for you
- the right to refuse a treatment
- same access to affordable and quality care and medications
- the right to a second medical opinion
- against personal medical discrimination in healthcare, workplace of school
Share a time when you had to advocate for yourself. What happened and what was the outcome?