APS own community ?

[Bloodredroses]

I wish APS had its own APS Specific community . Health unblocked is great but no APS . Specifically threads (YET) Only going to a APS book LAUNCH in London , which Prof Hughes was at , answered questions , met people. I would feel like no others have it . I’ve have never met one person with it . Just other autoimmune conditions . . Since Prof Hughes website joined with H unblocked . Seeking very specific APS ONLY symptoms , treatments , scientific medical , tips . ONLINE . Thank you .

[KerryA]

Where do you live?

Maybe if others on this group know where you are and realise they live nearby, perhaps you could get together with a few others with APS

[Bloodredroses in reply to KerryA]

aaaaghhh meet humans ? 😂

😱nooo I meant a blog . Just APS (. Global .)

[Bloodredroses in reply to KerryA]

Sorry I meant online. I HAVE EDITED MY POST . to be more APS ONLINE Specific . Thank you

[Ozchick]

Do you go to "My Hub" your top left hand corner then Hughes syndrome?

[Bloodredroses in reply to Ozchick]

I am on iPhone 12 , enter through HU emails. No HUB Format on this entry. Will contact HU Ask how to refine filter to the HUB instructions you have mentioned👍

[Raw57 in reply to Bloodredroses]

As you see it’s just below the header To the right of My Feed tab

Page

[Bloodredroses in reply to Raw57]

Great thanks , will try that . I have just entered through occasional HU emails direct to this thread ( which is refined by my other conditions to be fair I now realise) it’s a sophisticated website . I have not checked it out throughly . This blog is great for information. I must say . I help where I can . It’s good 👍

[Raw57]

There are APS Facebook groups if you are on Facebook but I find this group to be generous with information and concern for one another. I choose to only see APS comments only in the HUB tab.

[Bloodredroses in reply to Raw57]

Yes here is great, just wanting APS only . I only have IPhone 12 no p c I don’t see HUB as you described this format . I enter through emails that occasionally arrive on this AF some APS thread . I will contact HU ask how to filter to only APS on Ipjone format . Thank you

[lupus-support1 Administrator]

Perhaps if you asked a question about a topic, people would respond to a topic. A blog doesn’t by itself help loneliness. Interacting with other people can be helpful emotionally. As you can see, people have responded to you - not a blog, which is solely to communicate information.

Why don’t you begin by telling us about yourself? We want to help you.

With good wishes,

Ros

[Bloodredroses in reply to lupus-support1]

Thanks for replies. I miss communicated . I am not lonely , isolated , plenty of human interaction . I live in Central London , too many people , the best hospital and G P s. Retired and loving it . Love single alone living . I was just wishing for a specifically only APS topic blog to glean others symptoms treatments scientific medical facts . It has been suggested on here with a fbk group . JOB DONE . 🙏🏻 Thank you .

[Bloodredroses in reply to lupus-support1]

Looks like I have not spent enough time on HU Website . Opening tabs . The info received will set me on the way . Will also take a look at APS Friends on fbk as suggested . 👋 thank you

[Cinn987]

I wish so too. I jave met two others who ate now on y gacebook friends list but woukd love to have a local group. Feel very isolated when its online only

[Bloodredroses in reply to Cinn987]

Just narrow your search to your area for local real life APS Friend groups , as suggested on this thread APS FRIENDS Facebook . You are in CIN USA right? Join NextDoor neighbourhood platform google that register ( you join for your Immediate neighbourhood zone ( quite large ) by zip code . Post asking any neighbours suffer with APS /Hughes Syndrome /Sticky Blood Syndrome , you put settings to not show address or real name. Can Direct Message Private. See if you get any replies . It’s not that common so you may not be flooded . Even if you get 1 reply who can meet for coffee. Job done. You can message first before meet up at coffee shop you can see if you have same aims. For a local only platform, I have found my various goals . Good luck btw your local APS Clinic Hospital ‘may’ be willing to help but I found UK hospitals had a few moderated meetings or groups but don’t connect patients . APS would be small groups 😂

I never met a fellow APS patient at a clinic , as Haematology encompasses all the blood related conditions .. Not everybody wants to chat . (I do whilst in the waiting room . ) good luck

[Cinn987 in reply to Bloodredroses]

Thanks but in uk

[GinaD]

Im sorry you feel lonely and isolated and set apart from others due to a still-not-widely-understood chronic condition. I live in West Virginia in the States and I have gleaned so much from this site. I feel connected to fellow patients in Texas, London, Sweden, Massachusetts, and more. Internet telationships are not as comforting as in person meetings, but... I'm glad and have profited greatly from those I know call friends who I have virtually on this site!

[Evette123]

Hello, there is also a great Facebook group that discusses APS Extensively. It’s called APS Friends. I’ve found it amazing as well because you can ask questions and get replies from people experiencing APS. Healthlocked is amazing too but the forum will be an added bonus. Hope this helps.

[Bloodredroses in reply to Evette123]

Great thank you will definitely check that out . Must admit only used fbk for Messenger. thank you 👍

[Bloodredroses]

Thankyou

[Evette123]

👍🏽

[Portwing]

I would love to see that.

[katiekate87]

hi, there is Facebook groups if you are on social media? I was diagnosed with APS 9 years ago and find the group forums there really helpful

[Bloodredroses]

please post the other 2 Facebook groups links . Tnx

[katiekate87 in reply to Bloodredroses]

this is another

Group

[katiekate87 in reply to Bloodredroses]

Hope they help you’re welcome to message me on them or on Facebook if it helps? I’ve had aps for 9 years and have recently developed another autoimmune disorder associated with it. Katie x

Group

[MaryF Administrator]

Hi there will be some question and answer sessions, which I will post on here once dates are finalised. The link to the charity is here: ghicworld.org/ I will also alert you to support groups being set up around the UK once I have more clarification. MaryF

[Bloodredroses in reply to MaryF]

M

Questions and answers is by zoom ? I only have iPhone 12 .

[MaryF Administrator in reply to Bloodredroses]

No Facebook with a chance to write your question on beforehand, keep an eye out. MaryF

[Bloodredroses in reply to MaryF]

Facebook online chat ?

live answers by Prof Hughes ?

I don’t understand format ?

Thank you

[KellyInTexas Administrator]

all good suggestions from everyone-

[baba in reply to KellyInTexas]

I hope you are feeling better Kelly