Rare disease patient cards? - Hughes Syndrome -...

Hughes Syndrome - APS Support

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Rare disease patient cards?


Hello Everyone!

I went for my very first Haematology appointment this week and I have left feeling pretty positive - for the first time in ages I feel I am being taken seriously!

My consultant said that they believe that there is definitely something amiss and have ordered blood tests (they took 9 bottles in total!) and ordered a full body CT or MRI scan and then I am to go back in 8 weeks to discuss the results and next steps.

I have been told that I will now be under the Haematology centre for life with yearly appointments as a minimum and I can call up whenever I have question or arrange an appointment if I need to see them. My consultant mentioned a card to me to state that I have a rare blood disease with their contact details on so that if I am ever admitted to hospital the hospital staff can call them directly to discuss any changes to my care.

I feel that I was told so many things that I forgot them all! Has anybody else got one of these cards? and is this most peoples experiences I feel like they haven't confirmed a diagnoses for a specific disease but are near confident I will have something.

5 Replies

Well done with your determined progress to date! I hope things continue to improve in the right direction for you, thank you for letting us know, great to have positive news. MaryF


Oh its so nice to hear positive outcome and experience, well done you for your determination.

Sometimes just to be listened to and supported and know we have somewhere to go when ill is all it takes.

Thank you for sharing your news.

I haven't heard about the cards but some do wear SOS medical jewellery, I carry SOS medical records everywhere with me. Its my own made up sheet with all my records, history, drugs, and contact details for my specialist etc. I have copies everywhere, with my husband, in the cars as well.

I carry a dog tag that has a written medical alert symbol and it has a USB port that extends out when slide it pushed and it is has 2 or 3 Gigs available. I list Doctors , contact office numbers and emergency numbers it also list that doctors meds that they dispense. it does list all meds but NOT quantity that I take as that changes. I also have a card in my money clip and a flat dog tag that also lists Dia. problems - not all the tag would be to big and heavy to wear !! But your idea is great . most Doc's that i run into in ER'S have never heard of our Disease .

Hello, it is quite normal to forget some of the things said during a doctor appointment so bring pen and paper next time and take some quick notes down, and perhaps also so you can Google when you come home.

It is also useful to come with a ‘shopping list’ of questions, ready for your next appointment. I always prepare for every hospital appointment as if it was a school exam - with copies of relevant past clinic letters and scans to give away and I think carefully about what I want to ask about. It’s your appointment so make the most of it :-)

As for the card you ask about - I think different hospitals have different practice - which hospital do you go to for your haematology appointments?

I go to Guy’s and St. Thomas and see Prof. Hunt’s team and have a card with the names of all the members of the thrombosis team, phone numbers and out of hours numbers too. It doesn’t say my diagnose on the card.

I have made a Word document on my computer with all my details: past operations, allergies, diagnoses (a very long list) and all my medications. Every time there is a change I update it and print out a new copy to keep in my wallet. Everything is very brief, but the document is now in 3 A4 pages (complex/complicated patient history)

Every time I see a new doctor, or I see any of my regular and there has been a change since last time, I print out a new copy and bring. Takes me just a moment and is always very much appreciated. Every time I have been admitted to hospital, the copy in my wallet has been priceless!

Hope this help, good luck with getting a firm diagnose :-)



They used to be a blue card which itemises your medical condition and lists certain drugs such as corticosteroids, immunosuppressants, insulin etc

However, they fall apart but you can use MedicAlert bracelets or necklace. There is also MyMdBand which uses the latest technology so medics/doctors can retrieve your medical information.

They can save your life!

With good wishes,


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