Specialist EDS Clinic appointment booked

I've received my letter from the N. London EDS clinic for vascular EDS investigations. I'm due in toward the end of the month. I'm currently trying not to brick it - it's not so much finding out if I do have it, but finding out I don't and my symptoms are 'all in my head'. I've spent so many years being told I just need to 'suck it up' that I've tried to just steer as far away from looking up anything about vascular EDS (not to mention the only time I've seen cases about People of Colour like myself, it's been post-mortem studies....soooooooo I've decided to just not even go there really).

But is this really the best approach? I want to be able to present a case for myself, to ask questions, and I've lived with these symptoms all my life - to me, it's normal. I had no idea my fingers weren't supposed to bend QUITE that far, and I always knew my skin was so see-thru I look like a roadmap. So I don't even know what to suggest or talk about.

Thoughts welcome.

16 Replies

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  • Silvergilt I know exactly how you feel. Next week I go for an appointment which means a lot to me but feel petrified. I just don't want to be disappointed yet again. Mine is not with an EDS specialist but this is quite a step for me. What do I do what do I say and what paperwork should I take with me. My mind keeps going round and round.

    Like you I can see through my skin, used to get teased in school swimming lessons as all my veins on my chest stand out.

    I sincerely hope it goes well for you. Report back and let us know please. Oh, don't give up getting a diagnosis- I won't.

    πŸ€πŸ€πŸ€πŸ€πŸ€ 'M'

  • πŸ‘‹πŸ‘‹πŸ‘‹πŸ‘‹ hi mabsie...great reply!

    I have my gastro appt this afternoon 😯

    Will be thinking of you at your appt next week πŸ€

    😘 coco

  • Hi silvergilt. That's great that you have your appointment bookedπŸ™‚..But I can understand your anxiety..My son and I will be getting a referral soon to the private hypermobility centre in London. I want to make sure that we too are prepared with all we need, and also ask the right questions.

    I haven't yet fully considered of what approach we should take to achieve this, but someone mentioned I should ask my GP for any xrays,scans, tests that can perhaps be given in a file for us to take with us..Although I've no idea if this request is even possible?..In my experience's results so often are lost all together-between local departments or hospitals-or can't be found where they're expected to be,by the new consultant..

    I am going to prepare a medical history, as suggested by the UK, EDS website..Any other preparations you find out,I would really appreciate knowing..

    When you finally get your answers, it will give you piece of mind and a way forward.

    I sincerely wish you all the very best x

  • Wishing you & your son every best wish for your consultation. Your prep is bound to help lots

    πŸ€πŸ€πŸ€πŸ€ coco

  • Thank you Barnclown.☺ xx Wishing you all the very best xx

  • Oh my: you always put things so well, silvergilt. These are thoughts I wrestle with before all my multisystem clinics...and the wrestling is even worse before the first consultation at a new clinic.

    Am sure you'll have your medical history well organised (diagnoses, investigations, procedures, dates & depts, meds that have & haven't helped, multisystem signs & symptoms (onset, intensity, duration) etc etc. Every time I leaf through the pages of my live doc recording all this, I'm reminded never to discount/undermine these hard facts by imagining any of it is actually normal. I've got better at reporting this stuff in clinic with a deadpan expression...you're right: be as objective as poss when presenting your info. And remember: your body has no choice but to reveal its characteristics during clinical exam, so no worries there (I almost giggle when my EDS is being evaluated physically: the doctor's techniques simply seem hilarious to me)

    My fav clinician (the brill rheumy who recovered my infant onset lupus diagnosis) suggests we come we 3 main questions in our head. And she actually urges us to bring a companion. I find the 3 questions thing tough (I always have loads more than 3), but choosing 3 does focus the mind, and usually most of the other questions surface during the discussion on the chosen 3. I've only had a companion with me once....so I can't really comment on the benefits, except my husband definitely helped my doctor relax during the appt (they hit it off right away) and his feedback afterwards helped me believe I'd understood what happened

    Hope something in there is useful...it's hard to believe you don't know it all already, being the expert patient I know you are

    I cannot wait to learn how things go on the day

    πŸ€πŸ˜˜πŸ€πŸ˜˜πŸ€πŸ˜˜ coco

  • All good advice Coco. ⭐⭐⭐⭐⭐

  • πŸ‘πŸ‘πŸ‘πŸ‘πŸ˜πŸ€

  • The best approach is a positive one!

    We're VEDS and are also at Northwick Park with our child.

    The best thing you can take with you is family history, and family photographs - as they look for facial traits and causes and ages of death.

    Make a bullet point of your health and its history. If you've had vascular issues take Consultant letters regarding these with you.

    Many vascular EDS types aren't as hyper mobile as others and may have subluxations rather than full dislocations.

    Have you had skin or blood DNA taken yet? They may also want to photograph you, if you haven't had this done already.

    EDS is a weird spectrum disorder and some types just don't 'fit' into a set subtype, which is 'interesting' clinically but irritating if you're the patient!

    Good luck x

  • I too plan to go armed with family history next week just in case I get asked. I've photographed photos onto my iPad in readiness. In my family others bury their heads in the sand, I won't do that.

    Thanks for the advice you've given to silvergilt as it helps me too. 'M'

  • Unfortunately, all my family history is on my father's side of the family, who I haven't spoken to in decades. I have no photos (and they're also all people of colour - in which the hallmark facial traits never seem to appear, or don't seem to be recognised in any event.) Family history I do have though and what little I can remember I gave when they did the phone interview (several unexplained deaths/several haemorrhaging/etc) but, being in the US South, no one was ever going to look into the cases of a PoC family in any depth. Just the way it rolls.

    So I've found I'm sort of already behind the 8-ball as it were when it comes to trying to get anyone to look at criterion - anything I had in my past history was dismissed because in the US, if you can't pay, you don't get decent treatment...but I have the surgical scars and mystery stretch marks to try and back up what I've dealt with.

    What seems to have worked most in my favour is that I didn't go thinking I had this condition - my ex-husband knows someone with vascular EDS and, as we had been married for five years and he saw what I went through, he called me and told me to seek out whether or not I have the condition. So maybe not seeming too knowledgeable is helping. Also (as eye-rolling as it is to me personally) taking my current partner in with me seems to be taken more seriously and I'm not just written off as a hysterical woman, as I often was in the past.

    I think when I go in, they may do the genetic test - my son is on the ASD spectrum and this was one of my main questions because if it turns out I do have this condition, I want to be sure whether or not my son has it as well. I recognise a lot of my symptoms and issues in him at his age (clumsiness, bruising, 'growing pains', can't sit crosslegged at all - I never could even though I had teachers try to force my legs to bend! ). So I guess the next stage is the physical examination and then see if they do the blood tests as well. It's my understand it can take months before there are any results? Hey ho.

  • It's so easy for someone to say 'it's all in the mind'. Had it said to me so many times even when blood test results show different. I live in hopes that at least one specialist will look at me with fresh eyes. I'm sure you wouldn't have been referred to this clinic if they thought you hysterical, hypochondriac or all in your mind.

    So, you haven't got photos, don't worry about that, I'm only taking some on a just in case basis. I'm fortunate that one of my hobbies is family history. I don't necessarily know/knew the people but I have their death certificates with details.

    I was the clumsy child who thought they'd got hold of their glass and whoops up in the air it would go all over me and anything near me.πŸ˜€ Got a right old telling off from grandma if she was around. Would not have a disabled child in 'her' family! One day I intend to right a book on it all.

    Chin up and onwards and upwards for later this month! πŸ€πŸ€πŸ€πŸ€πŸ€ 'M'

  • Please can I ask what the 'facial traits' are that you mention..A pain specialist I once saw-unrelated to this-said when he first saw me, he thought I had a certain condition because of how I looked. But he had then read I wasnt diagnosed with it..He didn't say what 'it' was,but I asked what he meant and he referred to the cheeks? At the time I just thought he was making out that I was too slim in the face..and that wasn't very flattering!πŸ˜• xx

  • Exactly so - sunken cheeks, thin nose and lips are considered signs of vascular EDS, which is probably why it's missed in PoC because we don't have that kind of facial structure in the first place. As it is, every photo I've ever seen of vascular EDS on the internet is Caucasian people. I've done a bit more looking into it and it seems the majority of cases in P.o.C are only found via a postmortem or another type of extremely serious event...probably because of leaning on the 'facial traits' model (and if you have a Caucasian doctor, chances are they won't pick up on it). It's a bit of a minefield and may be why it wasn't recognised in my father's side of the family at all; not to mention it being a rare condition in any event.

    So it's my hope to address that somewhat in my appointment - it's a bit sticky because when trying to make people aware of their potential biases they tend to knee-jerk back, but facial or body characteristics only apply to a certain portion of a population. And I think in this case that's especially so for me.

  • Thanks so much for the infoπŸ™‚..there's a lot to learn.. I also believe -having suffered from experiance-that I have to be clued up,as the doctors I have seen aren't!

    I really wish you all the best, and I think that with all your knowledge and preparation,your appointment will go well..xx

  • Did you get a result back on VEDS or did they decide to test for this? This Clinic mentioned above is it Free or on the NHS & how did you get this appointment? I would like to be tested for VEDS as well Sudden Death my Grandfather 46 I have EDS 3 thus far but suspect Vascular as well :( Hope u r ok blesses hugs :)

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