Patient Leader Bulletin Board


Are you looking for other Patient Leaders to help with a project? :raising_hand_man:t4:🙋🏼

Maybe you want to profile other’s stories on your blog or podcast, or perhaps you are working on a local event that you’d love to get other Patient Leaders involved in.

Feel free to post information in this thread to help connect with each other.

And don’t forget - our Patient Leader Directory is a great way to search for Patient Leaders within specific condition areas to reach out to as well!

Please do not use this thread for any capital gain (examples: selling of services, recruitment for projects which you’ll receive compensation for) or solicitation (example: go fund me).

WEGO Health has the right to remove postings which we deem violate our TOS.

17 Likes

I’m always willing to collaborate with anyone! Helping each other helps all of us and our respective communities as a whole! :grin::purple_heart:

14 Likes

I am always one who loves to collaborate with anyone. We are all in this together and not in competition. If anyone wants to collaborate please feel free to contact me.

9 Likes

I am also willing to collaborate with anyone as well.

10 Likes

I love collaborating! I’ve been living with glioblastoma since Jan 2016. Check out our non profit for people affected by the disease. It’s called OurBrainBank. I’d love to share and collaborate further.

7 Likes

Check out my blog! Would love feedback. https://jessicamorrisnyc.wordpress.com/

6 Likes

i’m down to collaborate just hit me up!

7 Likes

Would love to work with anyone anytime. We are all in this together.

6 Likes

I would love to collaborate with anyone. Message me if interested

4 Likes

I want to do more work about the support gap that patients experience between symptom onset and diagnosis, so I’d love to hear from anybody who is thinking about that!

I just wrote an open letter to problem patients (which, of course I would love for you to read and share, but that’s not why I’m posting here!) in an effort to define this issue, and the feedback I’ve gotten so far really makes me feel like I’m on the right track.

Does anybody know any great resources about this, or does anybody want to help me make some great resources about this?

4 Likes

I would love to feature a guest author - or multiple - on my blog, the ridiculously-named Smellyann Strikes Again, lol… :wink:

Areas of interest for topics might include:

  • anyone with Lyme Disease, especially chronic Lyme
  • anyone who has experienced a misdiagnosis that has cost them quite a bit of time, healthwise
  • anyone who knows what their diagnosis/es is/are but are still fighting, for whatever reason, for proper treatment or ANY treatment
  • anyone who has heard from specialist after specialist that they are “complicated” (and really are!)
  • anyone with experience having BOTH physical AND psych issues, so that the medical establishment frequently dismisses physical cases as being psychosomatic
  • anyone with childhood trauma who wants to let it out, especially being a bereaved child of parental loss
  • anyone who wants to write about learning to find inner peace after dealing with… whatever took that away from you
  • anyone who has lost a child (yup, I’m both, yay me)
  • anyone who lost a twin or higher-order multiple (in our case, Twin-Twin Transfusion Syndrome)
  • anyone who feels like they want to talk about what it’s like being an expert on your own body but being patently dismissed because you don’t have lots of letters after your name or, as I’ve heard numerous times, something like “you’re just a mom”

… and on and on. I have NUMEROUS health issues, so that I have to use Excel to keep everything straight. As you can see, there are lots of possibilities for collab here. Anyone interested?

8 Likes

I would love to collaborate. Explore my blog : www.shrenikshah2110.com

2 Likes

I am wondering if there are others who suffer from chronic idiopathic constipation (CIC). I have many other medical issues, but I want to focus on CIC to begin with as I share my story with CIC. Rather than just tell my story, I was hoping to collaborate and connect with others who have CIC so that I can shed light on CIC from many perspectives. I am in the process of creating my first blog post. Thank you. You can contact me at kdegarcia@gmail.com

2 Likes

MightyStrongMS is definitely up for collaborating with any and all!! We just Love Rock’in Awareness and in that simple word is Education for those who battle every day🧡

3 Likes

I am always open to collaborate as together we’re stronger and better heard! Anyone out there:

  • Have a blood cancer?
  • Live or being treated in Boston?
  • Have a new life due to a cancer diagnosis?
    Let me know and let’s chat.
3 Likes

Collaboration is key! :bulb:

“Strength through unity” :zebra:

2 Likes

Would love to collab!

Feel free to message me at, risingabovera@gmail.com or www.risingabovera.com

1 Like