Professor Grahame- who is he? Appointments?

Appointments generally. Getting the correct diagnosis, finding the right doctor or dealing with the issues arising from being diagnosed with a hypermobility related disorder.

Re: Professor Grahame- who is he? Appointments?

Postby star gazer » Wed Nov 16, 2011 4:04 am

Hi all, after reading the above posts I need to clarify a couple of things, The situation I wrote about was my experience at the private hospital for the origional poster omega, who from the post I took that it was the private hospital they were asking about regarding parking and the situation with secretaries and sending info prior to their appointment. What I did not go into was the fact that I am an nhs patient and yes I too experienced the uch system but was also put in the untenable situation of having to take my son privately. I was referred by nhnn autonomic team to see prof Graham and waited two years for my appointment, this did not unduly suprise me (nhs)and given that there are very few facilities for hms patients, as I mentioned above have unfortunately been a patient of nhnn for 35 years since the age of 12 and have seen many changes within the nhs during that time. My son became very ill nearly three years ago (i was already under the autonomic team at that point) and my sons paed could not find anyone to see him. My consultant at nhnn had suggested gosh or st Thomas' hospital. gosh would not take him as he was too old, by this point I had a child who was too ill to be in school and the consultant paed wrote to the relevant agencies so that he could access tutors at home, this was by now his gcse year, he became severly depressed and was then under the mental health team, during an appt. at nhnn they mentioned something called ehlers danlos syndrome and thats why they had referred me to prof G at uch, I went for this appointment queued with everyone else at the booking in area then told to take a urine sample to a particular room, I had not been there before and so asked what I should be doing, the nurses seemed hassled, it was VERY busy and they were a little short with me (almost as if I were a nuisance I felt). after a long wait I was called in to see the doctor, I was so relieved that it was professor Grahame because for the 4 years of having my pots dx I have never once met prof Mathias and so felt confident that at least I would be seeing someone who knew what the problem would be, I did have a very thorough 45 min examination but was taken aback with the rapid fire questions & for some I had no answers because I didn't know beforehand what would be asked. At the end of my consult I mentioned my son who had already come up in the conversation re inheritance, I asked professor Graham if there was any way that he would be able to see my boy (the paed had written to the adolescent unit and he was turned down from there too) prof G was quite suprised that the adolescent unit were not going to see him. By this point we were weeks away from exams, I had spent many weeks sitting up all night looking after my boy and I was desperate, I asked prof Grahame if there was any way he would see my son privately, he agreed to but was upset that the nhs had let my boy down and that I was having to go privately to get my 16 year old seen by a doctor. My mum had some savings (we don't have savings or med insurance) and offered to pay for this consultation. Three weeks later my boy was seen by Prof Grahame, it was a completely different experience to being at uch, I had never been inside a private hospital before, we did not have to wait, the professor was not rushed because there was no waiting room over crowded & full of people waiting to be seen. He diagnosed my son wih ehlers danlos and marfans habitus, he also felt very sure that there were autonomic issues but because my son is too young for nhnn wrote to the paed asking him to arrange echo, ecg 24hour. from this it was found that he had severe runs of atrial tachycardia, my son is now under the royal brompton for the tachycardia and they are arranging for him to go on to st. marys for a tilt table test before they prescribe meds. Prof Grahame diagnosed severe laxity in my sons joints and said that his mental illness was probably atributed to being undiagnosed for so long he went on to explain that this was quite a common situation. we again borrowed some money from my mum so that my boy could see the ot who works with prof G at the private hospital, we could only afford one session but she gave us enough info and excercise to get him through in the short term. My son was referred to our local services ot and physio nearly 9 months ago and as yet has not even had an initial appointment with them.
There is a difference between being seen privately and on the nhs in that I felt there was more time and opportunity to discuss the situation at the private appt. My nhs experience at uhc was somewhat rushed but I know how packed the waiting room was. I do understand that people have had consultations that have left them feeling completely let down and have hoped for more from their appointments, I was one of them,I did think that I would be seen maybe yearly because thats how it works at nhnn, I also thought that I would be referred for physio orthotics splints etc, but because I did get the answers I needed and I was so over whelmed with what my son was going through I was just grateful to have my dx so I could then move on and get my boy seen. My follow up letter was very comprehensive and suggested stanmore, physio orthotics etc, all except stanmore have been arranged by my g.p, stanmore is on hold because I need to be here for both of my recently diagnosed children who also both have pots and eds.
It is lack of resources and money that make the situation frustrating, More money and resources = better education and facilities for the medics involved in our care. for many the exhausting journey to London for an appointment that is full of expectation and answers can be a complete let down when things have not turned out very well at all, I feel bad for anyone who has been through that, I know how upset purple sheep was after her appt. and how let down they felt after the long wait for the feedback letter to arrive, I think we were all waiting at about the same time for these letters that took weeks to come through, so to find that there are errors in the report does not instill confidence. One thing that might help with the initial consultation at uch would be for a list of questions to be sent to the patient that are going to be asked during the appt. eg when did you first walk did you crawl, clicky hips etc. these are asked at the appt but I could not answer because I didn't know,if i had the info in advance i could have asked my mum. When my son went I took all this info with me so that i could answer the questions for my son.
If I had the money I would go privately just because the whole experience with my boy was so fantastic and Prof G was brilliant with him (which is what my son needed) but I don't have the money and I was also a great believer in our national health service, not so much right now with all the service cut backs.
Please believe I really do understand that feeling of coming out of an appointment and thinking "well, is that it? what do I do now, and what will actually make me feel better",feeling let down and deflated, because I go through that several times a year at another hospital in London :wall: but thats another story for a different thread :)
Nobody would ever be little a situation that has gone badly for someone during an appointment and I know for purple sheep it was particularly distressing, we have to have a balanced view and write about all experiences otherwise the services provided by uch will not be improved if they assume nothing is wrong.
best wishes
star gazerxx (sorry raised more than a couple of points, but hey its 3 am and i can't sleep so who else am I going to talk to x)
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Re: Professor Grahame- who is he? Appointments?

Postby star gazer » Wed Nov 16, 2011 4:05 am

wow that post is massive, sorry but really had to explain
xxxxx
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Re: Professor Grahame- who is he? Appointments?

Postby barkingmad » Wed Nov 16, 2011 11:36 am

Thank you Star Gazer. we can forgive an essay at 3am in the morning! :lol:

You are right, as is purplesheep and omega, to write about the negative things that happen. At the end of the day they are there to support us and are aware that many of us have had such negative local experiences that to travel all the way to London has to have more meaning.

I will email UCH to remind them that there are still some issues. :D
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Re: Professor Grahame- who is he? Appointments?

Postby star gazer » Wed Nov 16, 2011 10:52 pm

Thankyou barking :) I think that the way forward is for the team there to have a fair overview of positive and negative otherwise they will not know what the problems are and put them right.
well done to anyone who made it to the end of my post :lol:
sg x
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Re: Professor Grahame- who is he? Appointments?

Postby Purplesheep » Thu Nov 17, 2011 1:06 pm

Thanks for all the replies. I read them yesterday but was way too tired and out of spoons to form any coherent reply. Not sure if I can manage now, but I will try! I am glad that people understand where I am coming from. I think maybe I do take things a little too personally sometimes, eg when I read comments that people shouldn't go into appointments with unrealistic expectations. I tend to be a little paranoid sometimes, but I have also read comments here and elsewhere that nobody has ever had any bad experiences with Prof. G. at all and that makes me feel really erased. Reading on here that other people's experiences weren't perfect either and that some had similar problems to me has helped me a lot. I don't want to worry people or put them off going, but before my appointment I had only read positive things about the UCHL and about how nice and caring everyone is, which made the contrast to reality much more shocking. I wish I had an explanation why my appointment went so badly, but I guess I'll never know. Maybe I caught Prof. G. on a bad day, and certainly the clinic was running massively late on the day I attended.

Donna, it would be great if you could bring things up again with UCH. I think one particular issue is that patients tend to get stereotyped, and those who do not fit (eg didn't do gymnastic/were not superbendy as children) tend to fall through the net. Thanks for all your hard work and all the information and support the HMSA provides. I don't think I would have been anywhere near as good at self-managing my EDS if it wasn't for all the help I have got on here.
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Re: Professor Grahame- who is he? Appointments?

Postby Omega » Thu Nov 17, 2011 1:36 pm

Purplesheep wrote:It is really unfair on us who have had disappointing experiences with Prof. Grahame to say that it is essentially our own fault and that our expectations were too high or we were looking for a 'miracle cure'.

By talking about my experience, I am not trying to be negative or put anyone off seeing Prof. G., I just want people to have realistic expectations, and that includes the good and the bad experiences.

Really sorry about the long post, just felt like I had to say this as I feel indirectly attacked anytime someone says we shouldn't be complaining about the UCH clinic as they are so underfunded. This board should be open to express all opinions and experiences and not just the ones who show Prof. G. in a favourable light.


Hi

You make valid points.
I haven't seen Prof G yet. I'm sure many of his patients-to-be will be looking to see how he was like etc before going to see him. It's just the way it is nowadays. Whilst I cannot comment about Prof G as I haven't seen him, I don't think you may not be wrong to say about the management side of his clinic by saying "under-funded". He is a bit like a one man band (a very talented and compassionate man I hear so far) with a couple of clerical assistants. It's a small organization but if one area is not doing well, then the small boat will quickly start to sink very fast. These consultants are all self-employed and they're running their own business. In my experience, both specialists and their PAs, they're a mixed bag of good and not so good. Luckily, in my experience, good ones outweighs not so good ones. We just need to get the best out of them wherever we can.

If there are negative feedbacks, then it's useful to say why you felt this way. Purple, you have done this very well by being very specific.

Knowing HMS/EDS is so complex, I was more concerned about Prof G if he would be able to look at all some paperwork e.g. consultants letters, test results etc beforehand. I'm sure he will prefer to start off with a blank canvas but when patients get nervous in front of an authoritative figure, an internationally renowned, foremost expert in EDS e.g. Professor, we may not be able to say things we should have said as we get quite tense and forgetful etc. So I would be pleased if he would be able to look through these or my referral letter before he sees me? Is this too much to ask?

If there are clear rules (what he will do and won't do), it would be even better. Then we would both know where we stand? It's not like we can have a preclinic consultation with his Registrar beforehand. After all, his consultation is strictly one chance. If you get on, that's good but if he hasn't even got or read your referral letter, you are almost *S**"D. It's hardly a good start is it? :shock:

Anyway, this site is so so so HELPFUL. If I didn't see this thread, I would have naively walked into his consultation room thinking he's got my referral letter and he knows me a little etc. Having read a few posts, that may not be the case at all!! :neutral: I read these warnings thanks to this thread and I will be far more prepared :D :D xx
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Re: Professor Grahame- who is he? Appointments?

Postby Omega » Thu Nov 17, 2011 1:55 pm

barkingmad wrote:Thank you Star Gazer. we can forgive an essay at 3am in the morning! :lol:

You are right, as is purplesheep and omega, to write about the negative things that happen. At the end of the day they are there to support us and are aware that many of us have had such negative local experiences that to travel all the way to London has to have more meaning.

I will email UCH to remind them that there are still some issues. :D


Dear barkingmad xx

That is so uber excellent.

Would you be able to do the same with his private clinic, please?

It seems in my impression, unfortunately, his clerical/administrative side isn't too great..(I never enjoy commenting negatively about someone or their work) In the light of some "home truth" over this thread, I have decided to ask my GP to copy her referral letter to Prof G in case when I walk into his private clinic, he hasn't got any paperwork about me at all, which would be a disaster.

Does Prof G actually care to read some background information re. his patients who are seeing him for the first time? I find this background info about patients would be quite essential part of any diagnostic process. I find it it would take some/in fact, a lot of pressure off. After all, if someone had a lifelong problem with undiagnosed HMS with a whole host of symptoms then surely it would take much longer than 60 minutes to go through. If he hadn't read some background info provided by appropriate doctors who are looking after patients, then it would be an uphill struggle for both Prof G and patients.

If HMS/EDS wasn't such a complicated and all encompassing beast, I wouldn't have been this worried, to be honest. It's a seriously, major event for anyone struggling with this illness over a number of decades and see someone like Prof G. There's no room to go wrong, at least in simpler administrative levels IMHO.

So thank you, barkingmad for your great work!!! :boohoo: :bday: :kiss:
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Re: Professor Grahame- who is he? Appointments?

Postby Omega » Thu Nov 17, 2011 2:08 pm

star gazer wrote: It is lack of resources and money that make the situation frustrating, More money and resources = better education and facilities for the medics involved in our care. for many the exhausting journey to London for an appointment that is full of expectation and answers can be a complete let down when things have not turned out very well at all, I feel bad for anyone who has been through that,

best wishes
star gazerxx (sorry raised more than a couple of points, but hey its 3 am and i can't sleep so who else am I going to talk to x)


Dear Star Gazer

Your post is really well written. Thank you for some useful points. Have you been offered to see a geneticist if you don't mind me asking this? Do you consider Geneticist has something to offer in your situation or not? This is something I have been wondering myself.
I'm not sure which type your son was diagnosed but it sounds like he's in need of a lot of medical care and I have to say, I know what you're going through..It's good to hear Prof G has been helpful to you. Thank you again for your heartfelt post xxx :D
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Re: Professor Grahame- who is he? Appointments?

Postby Omega » Thu Nov 17, 2011 2:32 pm

bree wrote:Hi Omega and Purplesheep

I am sorry if my post upset or offended you, i was in no way trying to make little of your experience or say it is all your fault, if the consultation did not go well at UCH or you did not feel you got help. I would never say that to anyone, I had to fight years and years to be taken seriously so I do know how horrible it is. Like you said purplesheep we all have the right to express our opinion and thats all I was trying to do. The point I was trying to make is that I can relate to Donna, in that I got quite angry/sad for a while that I was not been "cured", that whilst I did have answers I still had to struggle with these life changing symptoms and for a while I was quite angry and disappointed with the system. So for me I felt that was part of the problem and maybe other people felt that too.

Omega, I do believe you are right that there are a lot of admistrative errors and these do need to be brought to attention. It is right that we say what is wrong with the service so that improvements can be made. I do feel that lack of funding and resources will impact on the care that we get and it is important to address that do.

Again, sorry for any offence it was not intended and I really was not trying to silence anyone. Just trying to be positive and share the good experiences that I have had . Just to clarify I am an NHS not a private patient.

Bree


Hi Bree xx

You didn't offend me at all. :D

You have posted some very sane and reasonable points.

Someone said, "Prof G misquoted someone's condition" in his post-consultation letter. I find this to be very sad knowing people who was born with this condition, we had to wait for the major event to be understood FINALLY with an expert like Prof G after waiting for so long and being misunderstood over so many years by so many doctors who don't listen to us at all. We lived with this condition without having any "Name" on and it simply does not exist to professionals who are left rather perplexed.

It is no good to have this internationally famous expert if ADMINISTRATIVE side is not up to scratch in the same level as his expertise. I know his attitude/style to his clinical investigation e.g. start off with a "blank canvas" but if he cares to routinely read/look through some prior background paperwork of each patient before he sees his patients, some of these errors could well be avoided or at least, reduced.

I have a suspicion that his admin staff does not ensure that there's a file of patients ready for him to see before each consultation and he ends up getting a wrong end of stick sometimes as some of us could end up being too nervous or anxious during consultation unable to communicate very effectively or by the time, we arrive at London hospital, the long journey had taken its toll on us with this condition and we are so debilitated to say much etc.

He is after all a manager of these administrative staff who only does what they are asked to do; Prof G would need to establish a concrete administrative system so that he will spend a bit of time prior to each of his consultation to get to know each patient in advance and understand why they're there to take so much trouble seeing him. If someone is coming all the way from Devon, for example..that says something!! :D It is useful if he has a referral letter and some bits of paperwork to read in advance for that particular person who had taken trouble seeing him.

xxx
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Re: Professor Grahame- who is he? Appointments?

Postby Purplesheep » Thu Nov 17, 2011 3:41 pm

Omega, just wanted to say that during my appointment, Prof. G. DID have my referral letter in front of him - I don't think he had read it before the consultation, but he went through it towards the start of my appointment. In my case, this was actually a bad thing, as it was a letter from my rheumie that contained lots of mistakes! To make sure you get to discuss all the issues, it might help if you make a list what you want to address during the consultation. You can then either go through the list during the appointment, or even give it to Prof. G. and say those are the problems you would like to discuss most. Just be aware that asking about pain medication is not a good idea :P

Good luck and I do hope that your appointment goes better than mine did!
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Re: Professor Grahame- who is he? Appointments?

Postby bree » Thu Nov 17, 2011 8:45 pm

Hi Purplesheep

Just read your post about where you said you might have been oversensitive or paranoid. Just wanted to say I do sympathasie and again I am sorry if posts made you feel that way. I have been going to drs since 18 with various things bladder, pain, fainting etc. I got diagnosed at 35 by prof grahame and with POTS. The relief of knowing I was not mad was overwhelming and that now I feel a lot more supported. So it must be so horrible to see a specialist like him and still not get the answers or support you need. Its really understandable that you may get over - sensitive, I used to go to drs and be literally afraid to speak, I would only say half of what was wrong with me and would be extremely defensive. And I can see how my post might have come across . For me it helps me cope by been positive but I do realise not everyone has had a good experience.

I really hope you get the validation and support that you need and deserve.

Am sure Donna and the team will fight our corner for us. We are very lucky to have this site.

Take care and best wishes

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Re: Professor Grahame- who is he? Appointments?

Postby Spireite » Thu Nov 17, 2011 11:25 pm

It is indeed deeply upsetting to read that other people are having a wonderful appointment with lots of help and referrals and the standard is really high when you’ve had the inferior service. It is upsetting to read xx ‘always’ happens and he ‘always’ does this when you know he doesn’t. Some people get action plans while others of us don’t. All I was left with is a letter which is half right and half wrong. There is no point being re-referred as there was absolutely no interest in trying to help. This is what I find a most hard to take in. I mean short and snapped ‘can’t help.’ Change subject. No. Not on the agenda. The useless GP would probably refuse too – job all done for him. The local rheumies are a disgrace. I had diagnosed myself some months before and had done lots of research so no I did not have any expectation of ‘cures’ or ‘quick fixes’ and I find that quite patronizing. I can see my elderly relatives with hms. What is the point of struggling to London for nothing? And it is nothing to do with the nhs. It was a private appointment, running to time and I had private medical insurance to pay for any referrals. I had a lot of autonomic issues and others but so what? Didn’t want to know. If the specialist can’t help, then it seems that is it. Time was also most annoyingly wasted arguing that I was in pain when I’m not and insisting I did gymnastics when I didn’t. It doesn’t fill me with any confidence to go back or recommend. I agree with Purplesheep that he doesn’t seem to like people who don’t fit his stereotype.

I am now catching up after being out having treatment with a good team-playing consultant who does try to help, so I do know the difference.

On the subject of preparing a paper prior to the appointment then I do recommend it and it would be useful if this site could give the official policy of whether UCL would ideally like to optimize the limited time by having a paper in advance. My good consultant and I find it works well for us. I prepare and email a paper the weekend before I have an appointment with him outlining what I would like and some background information as to why I want that, and maybe a picture or two for fun and to help get the message across. Though I’m generally not sympathetic to doctors, for patients with a whole body full of problems, it must be difficult/overwhelming for the doctor to know where to start and so some guidance to the higher priority areas and steer them away from the less important bodyparts at this moment should be welcome. My good consultant can skim read it on email, and I also copy his secretary so she can print it out and put it in the file ready for the appointment. Then while I am being fetched from the waiting room he can skim read it again so we hit the ground running and maximize the limited time available. It was most valuable when a close relative of mine died unexpectedly between me sending the email and appointment date completely wiping my memory and leaving me temporarily with the attention span of a gnat. It was good that one of us knew what I wanted even if it wasn’t me and progress continued. It works well for us but I can’t see it working for any of the multitude of other consultants I’ve had the misfortune of briefly seeing.

I do think it is important to air the negative experiences to support those people who also have negative experiences making their bad situation worse wondering why they are picked on and singled out for poor service but may not be brave enough to come on the boards for fear of being hacked down.
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Re: Professor Grahame- who is he? Appointments?

Postby Omega » Fri Nov 18, 2011 6:13 pm

Purplesheep wrote:Omega, just wanted to say that during my appointment, Prof. G. DID have my referral letter in front of him - I don't think he had read it before the consultation, but he went through it towards the start of my appointment. In my case, this was actually a bad thing, as it was a letter from my rheumie that contained lots of mistakes! To make sure you get to discuss all the issues, it might help if you make a list what you want to address during the consultation. You can then either go through the list during the appointment, or even give it to Prof. G. and say those are the problems you would like to discuss most. Just be aware that asking about pain medication is not a good idea :P

Good luck and I do hope that your appointment goes better than mine did!


Hi Purplesheep :D

Thank you for your lovely thoughts for me. It was really appreciated. Again, I think you were incredibly brave to stand up and tell us as to your upsetting experience as a patient. Things need to be said if services were to be improved for other patients and nothing will change unless we speak out :bye: xxx
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Re: Professor Grahame- who is he? Appointments?

Postby Omega » Fri Nov 18, 2011 6:41 pm

HI Spreite xx

I completely agree with you. I would have thought that "professors" at teaching University hospitals are extremely thorough and I was slightly shocked by his private PA's attitude being so laid back (not doing much to help) by not sending me the correct forms to take to hospital etc. I do hear about doctor's "God Syndrome" but does that extend to their PA as well? :eh: Hope PAs shouldn't start to think themselves that they are above us patients only because they work with "Professor" ("God")? Incidentally, there's this record high rate of complaints made to GMC this year. Certainly, in my observations, patients aren't going to stay quiet if doctors aren't up to scratch nowadays. If Prof G is too busy by taking too many patients all at once during his clinic (not sure how many?),then quality in each consultation is bound to suffer as he isn't God after all :pray: He needs to allocate enough time to skim through the background info of each individual patient so that his clinic won't end up like a factory conveyer belt. I see other consultants and they do this routinely so I don't see how he shouldn't be doing any different. :think: :wink:
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Re: Professor Grahame- who is he? Appointments?

Postby star gazer » Fri Nov 18, 2011 11:55 pm

Hi Omega, I am wondering if you spoke to Prof Grahames private secretary or perhaps an agency supply, because when I have spoken to his private secretary (I don't think I can post her name) she has a different telephone number to the nhs secretary and has been very helpful and polite especially at the time of phoning I didn't have a clue about the private system.
If you are having a private appt. it will not be at the teaching hospital unless things have changed since June and the whole process is completely different. Having being in the situation of having my appt. first nhs and then sons private I can understand the frustrations of the nhs system. but I hope that you will have a positive experience, and with feed back from the forum maybe the nhs clinic can address some of the problems, but alas I feel as more and more of us go to uch to see prof Grahame, the more crowded and the longer the wait. the Ideal situation would be several clinic per week,(more money) question sheets sent out and returned before appointments so patients have the chance to answer the standard questions asked during the appointment but also with space to add additional information. The questions coverd in clinic cover not only skin joints wound healing etc but also cover gastric and autonomic issues as well so a reasonable amount of info could perhaps be answered in advance and then discused during the consultation before the physical examination. Anyway we can always dream of a lottery grant and a dedicated unit for hms and related disorders.

ps. omega, we did think about genetesist but eds3 does not yet have a chromosome marker, I am 3rd generation and now my niece is about to be referred, but after the difficulty we had trying to get my son seen, their g.p is writting to prof G for a private appointment. On our last visit with the prof he did talk about the family being invovled in a clinical trial as they are looking at eds and pots together in the same family, they need at least five members. we havn't heard yet but will wait and see as my cousin also affected but had prolapses plus joints and she has two children of her own.

any love to you all
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