Tanya,
Thank you so MUCH for being willing to be so vulnerable and tell your story. What a journey it has been. I'm so glad that you have shaped yourself around it in such a way, and your clients are incredibly fortunate to have an advocate who so clearly understands this work from all sides.
John,
Thanks for SUCH a great question, and I can't wait to read how others respond. I've discussed this with a large # of advocates over time, and I will gladly share a summary of what I've heard, but want to wait until we hear from others first hand.
carolanne,
thanks for making htis post/!
can i suggest that you also submit it as a blog? it will get seen by a different readrership there, and we'd love to have it in both places.
Gentlest hugs, Hanah. thank you for the incredible vulnerability written here.
I'll give two small thoughts to what you said, with a giant caveat that each of us is different.
My first thought is — after 18 years of running a massive FB group of EDS patients where most are the sickest most complex cases — I had to find an outlet. Another resource. a space where I can be easily reminded that isn't life for all of us. for me, that's a fb group called EDS athletes. it's a place to see the amazing adaptations fellow zebras are making and to get a broader look at the true spectrum of these conditions. there are zebras there for whom athletics means bed-based exercises in hopes of getting out of bed again. there are zebras who are striving to actually be paid athletes. and everything in between.
the second is — FOR ME — i needed to build some close relationships iwth others in the chronic conditions communit, who can be MY sounding board and where i can go to admit what i'm going thru, feel safe doing so, and they LEAN IN to support. they rach out to me when i haven't been active in a while b/c they know that's one of my depressive coping mechanisms is to go quiet in spaces that dont REQUIRE my presence.
Rachel, i'm THRILLED that reciprocal relationship is working so well for you. I know another patient doing the same and it is wildly beneficial for them as well.
The EDS path has changed so wildly in this time, but honestly not unpredictably. I watched my fibro and then my Lyme friends ride a similar wave. So some f the things that have outraged our community, i saw coming and even welcomed in a «we have to go thru this phase» mentality.
I'd love to have a conversation about this some time — in person, on zoom, or in a thread here!
Rebecca,
I've been honored to work with you on creating this space. As we discussed, all of us here at GNA are incredibly passionate about the lived experience advocate space (which we call survivor support in our formal marketing).
I'm an EDS patient who was lucky enough to be diagnosed back in 2001 — when they believed we were one in 500,000. It's been a wild ride the past 25 years. I've been a community advocate for 18 of those 25, but only learned independent patient advocacy even existed in 2024.
While I do not do one-on-one advocacy, I work in the advocacy space every day as a chronically ill human FIRST, a parent/grand of 3 chronically ill humans second, and as a member of the GNA team 3rd. I HAVE to live it that way, or #1 and #2 will INSIST that I adjust.
I'm eager for conversations here with others about how we adapt and adjust — both on the macro level (ergonomics, pacing, having back ups to reach for) and on the micro level (for example, «I HAVE to be on meeting X today for my hospitalized patient, but my EDS has taken my voice...again...now what?»)
I know patients using this approach. I understand it is expected to be less effctive because some of the cromolyn is too close to meals. but people who can't do 4oz at a time or have otherchallenges around the normal dosing.
I take mine in gatorade (can't do striaght water) but do the 4 oz liquid to 1/2 tube cromolyn 4x daily which works for me.
PS: I cannot move this post into 'advocate referral needed' for you because you've not finished getting your GNA profile approved. You cannot access that space until you've been through our required informational or 'onboarding' meeting.
ths post is visible to ALL readers because I cannot move it into that secured space that is availble only to vetted advocates. just fyi.
(Ill message you again about reschduling now. hope to see you soon!)
Very excited to meet you! We'll be talking soon when you join the informational session that's required b/4 your GNA profile goes live. please look out for an email from our team from help@gnanow.org in the next day or so.
hi Rebecca! We've got quite a lineup of advocates in the LA area.
I'm used the PA360 message feature to these advocates and encourage them to join this post. you can also do the same- use this search,and use the 'write a mesasge" to connect to any advocate.
Thank you so MUCH for being willing to be so vulnerable and tell your story. What a journey it has been. I'm so glad that you have shaped yourself around it in such a way, and your clients are incredibly fortunate to have an advocate who so clearly understands this work from all sides.
Could i gently suggest you repeat your intro in the intros post? it is VERY welcome here. it just may also get more eyes on it within thatpost:
gnanow.org/community/taking-business-to-next-level/general-tbnl/91-welcome-to-pa360-please-introduce-yourselves.html
Thanks for SUCH a great question, and I can't wait to read how others respond. I've discussed this with a large # of advocates over time, and I will gladly share a summary of what I've heard, but want to wait until we hear from others first hand.
thanks for making htis post/!
can i suggest that you also submit it as a blog? it will get seen by a different readrership there, and we'd love to have it in both places.
I'll give two small thoughts to what you said, with a giant caveat that each of us is different.
My first thought is — after 18 years of running a massive FB group of EDS patients where most are the sickest most complex cases — I had to find an outlet. Another resource. a space where I can be easily reminded that isn't life for all of us. for me, that's a fb group called EDS athletes. it's a place to see the amazing adaptations fellow zebras are making and to get a broader look at the true spectrum of these conditions. there are zebras there for whom athletics means bed-based exercises in hopes of getting out of bed again. there are zebras who are striving to actually be paid athletes. and everything in between.
the second is — FOR ME — i needed to build some close relationships iwth others in the chronic conditions communit, who can be MY sounding board and where i can go to admit what i'm going thru, feel safe doing so, and they LEAN IN to support. they rach out to me when i haven't been active in a while b/c they know that's one of my depressive coping mechanisms is to go quiet in spaces that dont REQUIRE my presence.
I'd love to have a conversation about this some time — in person, on zoom, or in a thread here!
I've been honored to work with you on creating this space. As we discussed, all of us here at GNA are incredibly passionate about the lived experience advocate space (which we call survivor support in our formal marketing).
I'm an EDS patient who was lucky enough to be diagnosed back in 2001 — when they believed we were one in 500,000. It's been a wild ride the past 25 years. I've been a community advocate for 18 of those 25, but only learned independent patient advocacy even existed in 2024.
While I do not do one-on-one advocacy, I work in the advocacy space every day as a chronically ill human FIRST, a parent/grand of 3 chronically ill humans second, and as a member of the GNA team 3rd. I HAVE to live it that way, or #1 and #2 will INSIST that I adjust.
I'm eager for conversations here with others about how we adapt and adjust — both on the macro level (ergonomics, pacing, having back ups to reach for) and on the micro level (for example, «I HAVE to be on meeting X today for my hospitalized patient, but my EDS has taken my voice...again...now what?»)
I take mine in gatorade (can't do striaght water) but do the 4 oz liquid to 1/2 tube cromolyn 4x daily which works for me.
If either the CONDITION scope can be widened — esp since the needs aren't about CARE for BPD — we may have better luck.
ths post is visible to ALL readers because I cannot move it into that secured space that is availble only to vetted advocates. just fyi.
(Ill message you again about reschduling now. hope to see you soon!)
Or is the knowledge set match more imporant than proxmity?
or is it a must have for both?
I'm used the PA360 message feature to these advocates and encourage them to join this post. you can also do the same- use this search,and use the 'write a mesasge" to connect to any advocate.
gnanow.org/advocates?search_type=speciality_id&speciality_id=18&locations=Los+Angeles%2C+CA%2C+USA