Sticky Blood-Hughes Syndrome Support
8,169 members8,388 posts

How can I ever thank you guys ?

I am the schoolteacher in hawaii who posted about a month ago about my concerns and frustration over my vague and ongoing health problems.

I have to thank all of you so much for not only your sound advice, but overwhelming support...I went ahead and raised hell (not my typical nature) until I got a referral to a rheumatologist who actually knew what hughes syndrome was. You were right; I tested positive and even though it's not thrilling news, I at least have an answer and can start to plan my treatment. I am going to speak with my GP about a referral on Friday.

Happy happy new year to ALL of you- I was shocked at how fast and caring your responses were...and will do my part to raise awareness about APS here in the US. Take care everyone; I will be on periodically to learn and offer support in turn.

Mahalo nui loa,


10 Replies

Thank you, this is most refreshing feedback, any help with education the medical profession in any form and the media and public is a good idea: Let us know if you need anything else. I am really pleased that you have some support now... Happy 2013 or at least a better year for you, always lovely to hear back from people. Mary F x


P.S. I do not wish in any way to promote the idea that I'm happy about my diagnosis- or to disrespect the struggles you have all experienced with this disease. I'm just grateful to all of you and slightly relieved. I hope I haven't offended anyone with the upbeat tone of my post:)


Hi there, it was not read like that, that, you have had an uphill struggle with now some breakthroughs, it is not all doom and gloom on here, and we have a new member!! Mary F x


An upbeat post is most uplifting. It is so refreshing to hear somebody who has been able to get a positive diagnosis in a relatively short time.

So many of us fought for decades to get where we are now often with the delay being disastrous.

I know you will not be pleased as such but to have a name and treatment plan is worth so much. Now you ave a way forward.

Good luck with your treatment.


Hi Joanna

Well done you, kicking up a storm and getting answers, it's better to know the enemy then you can fight it, I totally understand your feelings on diagnosis hon, I felt the same, just took a lot longer to get my answers, not unusual on here.

I'm so pleased you can now get treatment and hopefully feel better.

Glad you got sorted and will be raising awareness! The more the merrier!

Happy new year to you too!! :-)

Take care gentle hugs love Sheena xxxxxx :-) :-) :-)


Hi Joanne

So pleased that you have got a referral and a diagnosis. It can really help to feel safer and more in control. There's lots of good information and support here whenever you need it. All the best Ann


Aloha Joanne. Way to go...... That's what I call a result!! Some times we do have to kick a bit of ass to get what we want but as you say now you can get a treatment plan. It's always better to know your enemy than have to be left stressing about it.

Good Luck to you and keep us posted about your progress. Xx



Am sorry to hear your diagnosis is positive, but also thrilled that your attitude is also so positive! No, you did not offend. After 20 years of dealing with serious health issues I've learned that the most important tool is attitude.

I'm the one who lived on the Big Island and a part of my soul is forever there. Yet, Michigan is my home now and it offers much also. Let's do all we can to teach the doctors, ok?! Good luck to you.




Aloha Joanna, I'm very happy you are finding your way through the medical minefield.

Hau'oli Makahiki Hou and good luck for the future.



I am glad things are on the right path for you.


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