Sticky Blood-Hughes Syndrome Support
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APS!

Hey Everyone! It's been a while since I've posted but I wanted to share something with you all. I have created a blog about my adventures of travelling and living with APS abroad. I also want to make this a platform for others to share their stories for others to gain inspiration from, I will include all different kinds of hints and tips but I'd love for others to get involved. I'm part of a FB group for APS and I asked them for their feedback and what they would like covered. I'd love to hear from everyone and what you'd like to see on there and what would bring you to the site. Below is the link for the BLOG and I look forward to hearing your feedback..

Thank you so much

Beth :)

bethwilloughby93.wixsite.co... (will be eventually named apsandabroad.com)

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Best wishes for your adventures, so am I right in thinking your would like to offer your support to GHIC? MaryF

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Yeah, I was diagnosed with APS in 2014. I went travelling in 2016, now living in Australia however, travelling home to the UK frequently. Since connecting with other sufferers of APS they have expressed their concerns about travelling and other topics. I want to share my experiences and have others share their experiences too.

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That is great you want to help our charity ghic.world/, naturally you will understand that any blog is of interest but perhaps not a link to another forum, we look forward to hearing more from you. MaryF

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I don’t understand your comment MaryF - why wouldn’t a link to another forum be seen as ‘not of interest’? . . . Surely the more information that can be shared and the more connections made across forums the better?

Personally Bethw I am looking to go off travelling for 3 months to India and Sri Lanka and I’m not too sure how I am going to manage but I love that you are sharing and helping travellers like me with your experience ♥️ Thank you SO much 👍 keep up the good work x

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Yes thanks, we can see that a useful blog is a useful blog, by the way I notice you have just joined this forum! However on this platform we work with various guidelines and our forum is attached to the new charity, I believe Beth is an ambassador for a different one. We certainly link up with other Facebook groups who understand the full picture out there. Best wishes for your travel Beth. MaryF

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Hi zoedavies1 and welcome to our friendly forum. I read your comments with great interest. As a very welcome new member here I feel that your comments are a little misplaced. Perhaps you don't know how it works on this site yet? MaryF and all the other Admins do a sterling job here. Their support is unfailing. I personally was very near death and the Admins here helped me no end to receive the treatment I so desperately needed. Which brings me to my point. Constructive criticism is healthy and, in many situations, necessary. If we don’t know what our weaknesses are, how will we ever grow or change? There is a difference, however, between constructive criticism meant to help and unsolicited, negative criticism meant to hurt. Suggesting that we should share information from other sources is great. However, I personally think a clear line should be drawn between what we share and what we don't. APS is a complicated illness in itself. Many of us have other autoimmune illnesses, me included, alongside the APS. This is where I believe that confusion and conflicting information could be problematic. For example the front page of Beths bñog is very attractive and eye catching. If you look carefully you can see a gratefruit which people who are anticoagulated need to be very careful of. That is why in this instance I fully support the comments made by MaryF. When you get a chance to reflect I am sure you will see the validity of the very wise words MaryF has shared with you. She is a wonderful source of information and is always available for support and advice on the very complicated, and often misunderstood treatment for APS.

Best wishes from here InSpain

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I think this has been blown out of proportion here. The blog is just to share my experiences I’ve had travelling (past tense, my travels have finished) with APS and Lupus.. I’m still young and I want to inspire other young people that we can still live our lives. The blog isn’t to give any medical advice at all. It’s literally to let people know how I’ve done it and what I do.. there is disclosures on the website to state that no information on this website is medical advice and you should always seek medical advice from your doctor before doing anything exactly like I did from Prof Hunt.

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Totally Agree! My comments weren't directed at you. :D

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:)

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Thank you Beth, I appreciate your bravery around travel, and I hope you continue to have great life adventures meeting new people along the way. Best wishes. MaryF

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Dear InSpain

I have no idea about the complexities of APS yet as I only had my second positive test confirmed yesterday. To be fair I am already petrified after having a heart attack at 42 in July then told I have a hole in the heart and now potentially ASP. I am extremely grateful for the fact that there are forums such as this - and I think you wrongly misinterpreted my message - as I only asked a question? I did not imply any offence with this only a wish to understand further. As an Organisational Psychologist I encourage the collaboration of organisations and information as I see so many organisations working in silo’s. I appreciate that there is a need to be cautious in recommending various sites and I don’t doubt the great job MaryF and other admins do.

Any further information/ links/ sites/ recommendations to me at the moment would be extremely helpful. In particular I really do hope to travel next Yr and have no idea how I might do this yet.

Please do not think my message was offensive - but only a healthy constructive challenge to understand and clarify.

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I really would appreciate yours and other members of the forum advice and thank you for the welcome 🙏

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Oh dear! Yes APS is frightening which can sometimes make us give responses without thinking about them carefully. As a Clinical Psychologist with a PhD I agree we should question things. After all that's how we learn. This site is all about giving healthy constructive feedback and not about knocking people down. Which I mentioned at the beginning of my post - I asked you if you knew how this site worked yet?

I do hope you get the opportunity to travel. I was diagnosed with APS in 1989. It has never stopped me from traveling! Reach for the stars! :)

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InSpain - I haven’t given any responses without thinking about them or knocked anyone down?! I asked 1 fair question to MaryF to help understand why a link to another forum would not be a good thing? That is all. I totally appreciate the reasoning on this. However I find your comments quite attacking and offensive to a supposedly new member who might be ‘trying to understand the forum’ - you have definitely made me feel quite unwelcome.

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Your style of reply to me is exactly what I was talking about re your reply to MaryF.

I wish you all that you would wish for youself.

Good luck

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Please familiarise yourself with our charity website; ghic.world/ I hope you find it useful. MaryF

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Thank you MaryF - much appreciated.

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No problem. MaryF

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Curious to see how this goes☺️😁

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A natural writer.anything that helps people understand this disease and help others is a bonus

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GHIC is a wealth of knowledge and backed by medical professions including Professor Hughes . Whilst it’s good to share stories what fits one does not fit another for example the worst thing I can do is wear flight stockings due to bilateral popliteal artery occlusion it would cause me harm rather than help me.

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Hello there Beth my love, your blog sounds a great idea. How long since we first met and how far you have come.

On the charity stuff as I understand it this group is linked to GHIC and it is how the people running it want it to be. I think that’s fair enough.

I just like to see awareness being promoted whoever does it really. This is a lovely group and Mary does a grand job.

Well done dear Beth and I shall follow your blog as I follow everything you do.

Xxx

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