ATTENTION: all new/active Patient Leaders!

As I’ve been working through the site, I’ve noticed it’s been awhile since we all connected. Tell me about yourself! Name, age, interests! How long have you been a Patient Leader? Are you comfortable sharing your diagnosis? Are you interested in actively collaborating, or just here to learn?

I would love to see this site as active and collaborative as it was a few years ago, so call this me being the change I wish to see. Welcome to the Social Health network, y’all. :slight_smile:

Let’s talk!

3 Likes

I’ll start. I’m Alaska, 28 - I’ve been a patient leader for five years. I have Vascular EDS, as well as a few other rare/progressive issues with my mast cells and kidneys. I LOVE collaborating, and I love meeting fellow patients to build community with. One of my goals for being here is to connect with y’all on a deeper level; we can do so much good, together. <3

5 Likes

Hi Alaska!

I’m still pretty new here and learning how to navigate the site. Is there an app available or is desktop the best way to use the interface?

Anywho! My name is Annie and I’m 25 years old, diagnosed with a myriad of things including a rare genetic disorder called Periodic Paralysis and I have the Hypokalemic type, as well as having hEDS, POTs, other unknown autonomic issues we’re trying to figure out, MCAS, Gastroparesis, Intestinal Dysmobility, and Migraines. A few others but those are the main heavy hitters. I’m a fulltime wheelchair user as my paralysis continually leaves me unable to stand and use my legs well from the knees down.

I’m also a graduate from the Savannah College of Art and Design with a major in Painting so art, as well as music, is a huge part of my life!

I focus a lot on my Instagram page being a place where disability and fashion intersect and how the fashion/beauty industry needs to be more inclusive in their actions. I love creating and collaborating with brands and helping them realize the untapped potential the chronic illness and disability community hold.

I’m not entirely sure what I hope to gain from the site but I’ve greatly enjoyed looking at the courses and hope to work my way through those as well as hopefully connecting with others! :slightly_smiling_face:

5 Likes

I love this! Thank you for starting this forum thread! Wonderful to have you here :slight_smile: I started my advocacy efforts in 2012 focused on psoriatic arthritis and avascular necrosis. I first started online, but then started going to conferences and inserting myself into any convo I could! I then realized that YES I LOVE my condition community, but what I’m passionate about is advocating for ALL patient leaders. So I still do PsA advocacy, but I focus most of my efforts on helping to build up new Patient Leaders and to connect them with opportunities for them to shine!

6 Likes

Hi, Annie! I like to use the desktop version myself, but I don’t think I’m familiar with the app. Nice to meet you!! I’m actuallyalaska on IG and my inclusive/disability forward modeling agency is always looking for new talent if you’re ever interested in connecting about fashion and accessibility. :slight_smile: I’m glad you’re here!

3 Likes

Yaayyyy Julie! Nice to meet you!! I’ve definitely seen you around the site as I’ve grown as a Patient Leader and seeing your name on this thread is a great feeling. And congratulations on having over TEN YEARS of advocacy work on the books, by the way! That’s an amazing and truly aspirational example for other Patient Leaders.

3 Likes

Hello Alaska & Annie & Julie!
I’m Christi Hibbert. I’m a clinical psychologist who was diagnosed w breast cancer in 2019 & a WEGO award winner Best in Show Blog 2020. I’ve had so many complications since my diagnosis, chemo, & 14 surgeries, including breast implant illness, strangulated hernia, and then hernia mesh illness. Since my last surgery 7 months ago I’ve been diagnosed w H-EDS, MCAS & POTS (like a couple of you have been!). I also have gastroparesis. I carry the BRCA1 genetic mutation as well.

My advocacy focuses on the mental-emotional & trauma aspects of breast cancer, and now really all the things I’m dealing with. I want to help integrate better MH care into healthcare overall. I’ve been an expert & advocate for maternal mental health & postpartum mental health for 26 years (I’m a mom of 6), & I also specialize in grief/loss/trauma, so it’s a good fit for me to advocate from my personal experience & incorporate my professional expertise too.

I’m always open to collaborating & am very active on IG @drchristinahibbert & really all SM platforms. So happy to connect w you all!

5 Likes

I’m Liz. I’m in Cincinnati and primarily advocate for bladder cancer, AYA cancer, and ostomies. I’m a contributor and moderator for both BladderCancer.net and Type2Diabetes.com. I used to also moderate for Migraine.com, but life got a bit too busy! I have been a patient leader for a while. I started on my own with my bladder cancer diagnosis almost 7 years ago. I started writing with HU in July 2020 and joined WEGO shortly after. You could say I’ve been around the block! Always happy to collaborate or learn!

3 Likes

Hi Everyone- I’m Serena and I’m a Rare Disease Advocate/ warrior. I have many chronic conditions (CVID/Gastroparisis/Connective Tissue Disorder etc) but I also have many interests and gifts to share. We all do. I love collaborations and creating art with messages and reminders that we’re in this together and how important it is to be accompanied in your journey

3 Likes

Great idea! I’m a bit of a lurker so far, reading posts but a bit unsure about what to say in a comment! :sweat_smile:

I’m Rachel Hill, also known as The Invisible Hypothyroidism, and I advocate for hypothyroidism and Hashimoto’s. I’m 30 this year. Diagnosed since 2015. Interested in all kinds of collabs, ideas, learning etc.

I feel we have so much to gain by each other’s support and insights.

3 Likes

I know I’v e been a Patient Leader for 10 years… I’m in Texas. I’m in a smaller town just South of Dallas. I deal with “several” illnesses. Lupus, RA, Osteoporosis, Heart attacks 2… along with all of the complications that go with them. Nice to meet you. I’ve been with WEGO/Social Media Network so long I sometimes forget to come back in and talk about my health and Advocacy work… Have a great day… and ask anything… I’m an author, PLAY LOTS OF MUSIC.! I’M HAVING COLLARBONE SURGERY NEXT WEEK. I fractured it and my shoulder blade LAST July 4th! I had so many complications from RA and Lupus we had to postpone surgery all this time.

2 Likes

It’s great to connect with you - I just followed you on Instagram!

My name is Miracle, 54 years old and like most of you I have a few issues that make most days pretty interesting. I was diagnosed with Multiple Sclerosis when i was 30 years old, stage 3 COPD 6 years ago, and I was recently told I have POTS as well as a fairly fast growing nodule on my lung. One month ago I had a hiatal hernia repaired which has been a huge Blessing and had made a tremendous difference in my life. I am very happy to have come across this community and i look forward to getting to know all of you better. [quote=“Alaska Casey, post:1, topic:1027, full:true, username:alaska.casey”]
As I’ve been working through the site, I’ve noticed it’s been awhile since we all connected. Tell me about yourself! Name, age, interests! How long have you been a Patient Leader? Are you comfortable sharing your diagnosis? Are you interested in actively collaborating, or just here to learn?

I would love to see this site as active and collaborative as it was a few years ago, so call this me being the change I wish to see. Welcome to the Social Health network, y’all. :slight_smile:

Let’s talk!
[/quote]

Hi there! I’d actually encourage you to check out our newly designed site, where you can interact & engage with SHN members! Our Community Page is a great place to start. Here you can ask questions, respond to members or share your own story. Hope to “see” you there!