EDS Hypermobility 3

[elliejjtiny]

Not sure how to start this off so I'll just copy and paste sparkle's opening post from the last thread and hope I've spelt hypermobility right in my thread title .

We reached 1001 threads, so here we go with a new thread. This thread was originally started so we could get together and share experiences and expertise in Ehlers Danlos Syndrome, Marfans, Benign Joint Hypermobility, and any other medical conditions including connective tissue disorders which cause joint hypermobility, pain and all the associated symptoms.

[IShallWearMidnight]

do you know who is on which day? I'd be really keen to hear Prof Matthias (as DD would be transferring to his clinic in a few years) as well as Dr Ninis, but knowing my luck they'll be on different days. Might have to see if the finances (and DH's tolerance at being abandoned) will stretch to both conferences.

[TheHumancatapult]

Midnight no don't know which days hopefully 2nd July should know

Yeah why I booked for weekend in the end plus ok yes means I get a break to

Once more comes out will post

[SparkleRainbow]

I talked about it with dh last night, and he is supportive of me going to one of the days of the conference...will pick the best day. Wouldn't it be lovely if we got to meet each other too, frankly worth going just for that

THC - sports day next week for us. I can not believe that your ds is still not getting the right support to take part, and at someone calling him that! A child did that in ds' class in the autumn term, and told his sis that he had been taken to hospital when he hadn't....dd1 (who was only just 6 at the time) was so angry, told headteacher who went absolutely ballistic. Not had any more such comments from the little madam (cos she is) since......yet!
Ds is in terrible pain with his left hip, and transferring pain into his mid thigh. Ta is going to take him to the swimming pool this afternoon, to see if the water and gentle movement helps.

Mycars - pain is a horrid horrid thing. Ds has had vomiting with pain before, although not projectile thanksfully....I pay 20p a vomit if they get it in the bowl and not over the floor, settee bed I am such a kind mother. and yet not surprising that you are still waiting to hear from GOSH. Irregularities in the skin sample means not EDS III though, so what are they looking at?

Bizzey - we have never seen a geneticist, was dx by rheumies, well by Prof Grahame after direct referral to him. No-one has ever suggested seeing a rheumie, even prof grahame gave me advice regarding having children.....that was donkey's years ago though as I guess things have changed.
My ds sees his paed in the neuro clinic too, but I just thought that was because she had a space in that clinic and slotted him in...it may be where they put dc who have issues that would affect their schooling, as she always asks about how supportive school are being and if she can help, with no other dr other than the gp does.

[TheHumancatapult]

sparkle

we was sent to proffesor Pope as Rio does not seem to fit anywhere and even now jut had chat with him on the phone as he is convinced more than EDS going on and is waiting with intrest for the gene reults in next few years tha be done and he has decided that time to push ahead with the muscle biopsies

sparkle/never

what about trying the eds helpline see if they cna tel you who is taling which day 0208 736 5604 .be good to meet you ladies if you cna make it

sparkle lot if ds cant cope with that amoiunt of people and everyone dashing around but yes im trying to refrain from wanting to find out whi9ch darling it was and talking to his mum

.Sorry that ds is struggling hopefully the pool will help with ds pain .Im seriously considering a hotub in garden as he loves hydro so much

[TheHumancatapult]

ok hve list of who is takling when
Saturday 9.45am
Keynote Speaker ? Dr. Clair Francomano MD ? Title TBC

Dr. Francomano is the Director of Adult Genetics at the Greater Baltimore Medical Center in the USA. In addition to her expertise in genetics and the hereditary disorders of connective tissue, Dr. Francomano has a long interest in integrative medicine, including nutritional supplementation and applications of energy medicine to optimize health



Saturday 11.00am
Dr. David Low ? POTS and EDS
Dr. Low is a Clinical Research Associate Fellow and the Clinical Research Lead for the Autonomic and Neurovascular Medicine Unit at St Mary?s Hospital, Imperial College London. Dr Low?s research, as well as the research of the Autonomic and Neurovascular Unit, specialises in cardiovascular and thermoregulatory physiology, as well as allied areas of autonomic function.

[TheHumancatapult]

Saturday 12.15pm
Dr. Khullar MB BS ? The Bladder and Gynecological problems with EDS
Dr. Khullar is a specialist in Obstetrics and gynaecology and Urodynamics (Bladder issues) with a special interest in EDS and will be talking to us about the complications that can arise within these areas with EDS. Dr. Khullar is a subspecialist in Urogynaecology with multiple publications in the field of urinary incontinence and vaginal prolapse. 
Current areas which he is involved in are quality of life assessment after vaginal prolapse, co-ordinating a multinational studies using collagen mesh for anterior vaginal wall prolapse and studying treatments for mixed urinary incontinence.

Saturday 2.30pm
Dr. Adam Farmer PhD MRCP ? EDS and the Gastroenterological system

Dr. Farmer is a Gastroenterologist and will be talking to us about gastro problems in EDS, including the bowl, reflux and digestion. Dr. Farmer has authored over 20 published articles, written seven book chapters and has delivered lectures both nationally and internationally. His main clinical interests concern all aspects of gastroenterology and endoscopy including irritable bowel syndrome, oesophageal disorders, defaecatory disorders and the evaluation and management of chronic abdominal pain.

[TheHumancatapult]

Saturday 3.45pm
Dr. Claire Williams and Dr Netali Levi ? Psychological issues with EDS

r. Williams and Dr. Levi will take their expertise and experience to talk to us about the psychological issues that come with a diagnosis of EDS, and the problems that arise from years of no diagnosis. They will also discuss the anxiety and depression that can come with EDS.

Saturday 5.15pm
EDS UK Trustees and Staff Q&A

[TheHumancatapult]

sunday
Sunday 9.45am
Dr Alan Hakim MB MA FRCP ? Fibromyalgia and Chronic Fatigue with EDS

Dr. Hakim is a Rheumatologist and member of the EDS UK medical panel. Dr. Hakim will be talking to us about Fibromyalgia and Chronic Fatigue in EDS. Dr. Hakim trained in Medicine at Cambridge University & Addenbrooke?s Hospital, then Medicine & Rheumatology at UCH, London, and an Arthritis Research Campaign Clinical Fellowship at St Thomas? Hospital, before becoming a Consultant Physician & Rheumatologist at Whipps Cross University Hospital in 2001. 

Over ten years, as Lead Clinician Dr. Hakim maintained & developed a high-class Rheumatology & Osteoporosis service, and large portfolio of clinical trials, and in education & research he has 100 publications, including chapters in 4 major textbooks & co-authorship of 5 1st Edition books.

Sunday 11.00am

We will be holding workshops within the following categories so that people will have a chance to talk and share their thoughts, experiences and stories.

• Parents Workshop
  
• Young Adults 20-35 Workshop
  
• Teens Workshop 13-20
  
• Adults Workshop
  
• Children Workshop (under 13)
  
• Vascular EDS Workshop TBC

[TheHumancatapult]

Sunday 12.15pm

Dr. Jane Simmons MCSP MACP ? Managing Pain; principles and practice for EDS
Jane will be talking to us about physiotherapy and EDS and pain relieving techniques that can help with the condition.
Jane is an educator, researcher and clinician who has worked in a wide range of sport, clinical and educational settings in Australia and the UK. In 2010 Jane completed a professional doctorate entitled ?Advancing practice in Hypermobility and Osteoporosis?. She is a clinical specialist in Ehlers-Danlos Syndrome(hypermobility type) and Hypermobility Syndrome at the Hypermobility Unit in central London. Jane is author of several book chapters and peer reviewed research articles on the hypermobility related topics and is honoured to be a medical advisor to EDS Support UK.

[TheHumancatapult]

Sunday 2.30pm
Dr Nelly Ninis ? Your child and EDS
Dr Nelly Ninis is currently a consultant in General Paediatrics at St Mary?s Hospital, Paddington. Dr Ninis, has a special interest in EDS and will be talking about EDS and your child, in both a medical and sociological aspect.

Sunday 3.30pm
r. Will Wallis PhD, MRCP ? Cardiac complications in EDS Type 3 (Hypermobility)
Dr. Wallis is a Consultant Interventional Cardiologist with an interest in Ehlers-Danlos Syndrome. Dr. Wallis will be speaking at our conference about cardiac complications that can happen with EDS Type 3 Hypermobility. Dr. Wallis qualified in 1986 at St Thomas? Hospital, London, having undertaken pre-clinical training at Pembroke College, Cambridge. He continued his training to become a Specialist Registrar in Cardiology at St Thomas? Hospital, The Royal Brompton Hospital, The London Chest Hospital, and latterly St Bartholemew?s Hospital. He spent 2 years at UCL undertaking research into Left Ventricular Hypertrophy for his PhD, which was awarded in 1997.
Dr. Wallis is currently a consultant Interventional Cardiologist at West Herts NHS Trust and is the training lead in Cardiology at Watford General Hospital.

[TheHumancatapult]

Medical Panel Q&A
Sunday 5.00pm

Our closing session - your chance to ask questions to our panel of medial professionals about EDS.

[TheHumancatapult]

there you go ladies .Im thinking Sunday looks very intrewting bearing in mind Dr ninis is who proff G refers to now

[TheHumancatapult]

linky

[http://www.eventelephant.com/edsukconference2012/pages/TicketInformation.htm]

[TheHumancatapult]

www.eventelephant.com/edsukconference2012/pages/TicketInformation.htm

[moosemama]

Hi all Not been on for ages, caught up in ds1's disastrous statement debacle and the school and outreach team totally failing him - poor kid doesn't know which way is up and is showing lots of different physical manifestations of his anxiety.

Called ds2's paed's secretary last Friday after not hearing anything since his appointment two months ago. Turns out there was a temporary/pool secretary on when he was seen and as a result he has fallen through the cracks. She drafted a letter to physio, but then this xray results weren't tied up with his file and family history. Secretary apologised, checked and found the xray results and put the whole lot on his desk on Friday afternoon for him to look at (which of course, being Friday afternoon, he is unlikely to have done).

So, being the NHS, I'm not expecting to hear any more for a couple of weeks.

In the meantime, ds is struggling a lot. He has lots of hip pain and his ankles are giving out on him constantly.

School are still being supportive though (which is surprising given how they've been with ds1 recently). Of course I will have to go in and give all the advice again come September, as I doubt it will be passed on from year to year.

[bizzey]

OMG ..THC What a fantastic up date !!! I am so tempted to have a weekend away !!...Have not taken it all in will be back once I have read it properly but wow ..thank you !!

[bizzey]

SUNDAY is defo the one i might look at as well ??...Tooo much intfo at the mo !

[TheHumancatapult]

Moose is it that the PI team not going take on or they ate crap doing ? . Yes reports take for ever . Gosh are the worse :(

Does ds1 have a statement at all

Bizzey I'm there for weekend including banquet dinner diet will be suspended that weekend

Going be home rather late on the Sunday night I suspect but hoping eventful weekend
Some may not be relervent to our dc though as it is for all with Eds but I agree Sunday looks good

[SparkleRainbow]

I am also interested on the urinary incontinence speaker on Saturday, but can't afford both days so Sunday looks best, fatigue, pain management and Children with eds and the parents workshop, although could be an hour in which we could meet up properly, maybe at the parents workshop (mn hi-jack approaching)

I wonder if I might be able to catch Dr Khullar on the sunday.....

Ds sobbed last night, saying he had had enough of being in pain, and wished he had never been born. He is just so tired more than anything.

[elliejjtiny]

Your poor ds sparkle . I had to leave DS2 at preschool today when he was howling. He was so tired but he was off all last week because he had a cold and it wiped him out so I said to his keyworker that I would pick him up half way through the session. I'm quite glad I took him though as his key worker said there is an option to get him some extra settling in sessions at school. I think I'll do that as he's really not keen at the moment.

The speakers at the conference sound really good. Definately something to take DS2 to in the future as I'm sure he would love to meet other children with EDS. It would be worth it just for that I think.

[IShallWearMidnight]

typically there are speakers on both days I'd like to hear, so am currently "in negotiations" with DH (plus trying to get a shedload of work done I'm not MNing at all here as I have a better chance of convincing him I should go to both days if I've invoiced loads ). I'm up for a mini-MN hijack though.

Change of subject - DD was at the hospital today (follow up appointment after her gastro issues earlier in the year, signed off by gastro paed, but it seems she's still on the books of rubbish pead - who, wait for it, is the rheumy specialist for our hospital ).. anyway... she's been convinced for a while that she's shrinking, and when they measured her today, she was 1.2 cm shorter than when she was measured at the Brompton last September. Is that something I should be mentioning to someone (GP?) or wait till Dr Ninis? And is it a EDS problem, or something else? She was definitely standing up straight today, as the nurse manhandled her a bit, and pulled her chin up, so unlikely to be a slouching thing. I might have a google later but any ideas anyone?

[TheHumancatapult]

Yup definite meet up and your day tickets include lunch now do we need a secret handshake so know who we are . Though I'm easy to spot red hair and crashing into everything in my power chair it's my new one but not as easy to turn in small spaced but it is fast and has fab range I normally use manual indoors as more manevuable but since just me can't mange both and bag on train

Sparkle you think coming to end of term just plain worn out and yeah that sucks if it's next year were have do mini kid meet or try getting them together


Midnight

It may just be different equipment within 24 hrs Ds grew 2cm lost 1 then lost 2 and sane period lost 1kg somewhere

[TheHumancatapult]

It may be worth calling and sorting tickets shortly not sure how Many it seats

[TheHumancatapult]

Also worth asking if can pay in bits have split mine over 3 month s not sure I'd just having package doing that

[auntevil]

Midnight - GOSH like to measure DS3 themselves at intervals, as they don't rely on other hospital measurements - as apparently their all different (wtf?!).
Last measurement he grew 0.6 cm and put on 200g - in about 9 months. How they can be that accurate I have no idea. I would have thought time of day, how the spine shrinks down during the day, how much is eaten, how much is 'passed out' all has a lot to do with it that small fluctuations are almost impossible to tell.
His next measuring session is this month. Hopefully they will see a pattern develop and be able to estimate his growth rate.