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Hughes Syndrome APS Forum

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APS own community ?

Bloodredroses profile image
31 Replies

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 .

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Bloodredroses profile image
Bloodredroses
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31 Replies
KerryA profile image
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 profile image
Bloodredroses in reply toKerryA

aaaaghhh meet humans ? 😂

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

Bloodredroses profile image
Bloodredroses in reply toKerryA

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

Ozchick profile image
Ozchick

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

Bloodredroses profile image
Bloodredroses in reply toOzchick

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 profile image
Raw57 in reply toBloodredroses

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

Page
Bloodredroses profile image
Bloodredroses in reply toRaw57

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 profile image
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 profile image
Bloodredroses in reply toRaw57

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 profile image
lupus-support1Administrator

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 profile image
Bloodredroses in reply tolupus-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 profile image
Bloodredroses in reply tolupus-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 profile image
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 profile image
Bloodredroses in reply toCinn987

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 profile image
Cinn987 in reply toBloodredroses

Thanks but in uk

GinaD profile image
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 profile image
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 profile image
Bloodredroses in reply toEvette123

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

Bloodredroses profile image
Bloodredroses

Thankyou

Evette123 profile image
Evette123

👍🏽

Portwing profile image
Portwing

I would love to see that.

katiekate87 profile image
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 profile image
Bloodredroses

please post the other 2 Facebook groups links . Tnx

katiekate87 profile image
katiekate87 in reply toBloodredroses

this is another

Group
katiekate87 profile image
katiekate87 in reply toBloodredroses

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 profile image
MaryFAdministrator

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 profile image
Bloodredroses in reply toMaryF

M

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

MaryF profile image
MaryFAdministrator in reply toBloodredroses

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

Bloodredroses profile image
Bloodredroses in reply toMaryF

Facebook online chat ?

live answers by Prof Hughes ?

I don’t understand format ?

Thank you

KellyInTexas profile image
KellyInTexasAdministrator

all good suggestions from everyone-

baba profile image
baba in reply toKellyInTexas

I hope you are feeling better Kelly

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