Our Adviceline is open Tuesdays and Fridays from 9am to 3.30pm.
You can call during these times (if the line is busy please leave a message) or email at any time.
Below you will find our frequently asked questions and at the bottom is a link to our Factsheets library.
Contact details are below the Frequently asked questions.
GPs are able to diagnose hEDS and HSD in adults, they can use the GP toolkit to do this, as it has a diagnostic criteria for hEDS with a scoring system to fill out.
Taking a list of your symptoms as well as a family history would be beneficial to help with an accurate diagnosis.
If you do not meet the needed score, it might mean you have HSD, and they should still be looking at management regardless of the diagnosis you receive.
Since 2021, rheumatology has rejected referrals for hypermobility and asked that GPs diagnose and oversee hypermobility patients. If your GP isn’t comfortable with diagnosing, a referral to rheumatology may be required. If this is rejected, please contact your local integrated care board and explain the situation to help with the referral process.
Please remember that rule-out testing is not conducted for hEDS patients but if your GP has any concerns about a rarer type, they can do a referral to genetics for this to be investigated.
After getting a diagnosis, it is important that symptoms are addressed appropriately, with action taken.
If you are in Scotland, Wales or Northern Ireland it can be difficult to get a referral over the border to England to see a specialist. Please consult with the board to get this pushed through and ask your local MP to help.
In 2023 the diagnostic criteria for children changed (the paper can be found here). This means there are now eight different hypermobility types within pediatrics that a child could be diagnosed with. These can change as they mature, especially if they have more symptoms as they get older.
When they are biologically mature or reach the age of 18, the 2017 diagnostic criteria can then be used to diagnose hypermobile Ehlers-Danlos syndrome if the criteria are met. The GP will need to do a referral to pediatrics to look at diagnosis and management.
Children under the age of five are not usually diagnosed with hypermobility disorders as most children are hypermobile; this also reduces the risk of missing other conditions which may present as the child matures. However, management should be put in place as early as possible when issues are identified. For instance, if a child is experiencing pain and joint issues a physiotherapy referral should be made, or if they have flat feet, orthotics should also be referred to.
The most important aspect for children is management. Please do not hesitate to speak to your doctor about getting referrals placed to ensure areas that require attention are addressed. If the GP or pediatrician is worried about a rarer type of EDS, they can refer to genetics for this to be investigated.
If you or a doctor suspect that you have one of the twelve rare types of EDS, the pathway taken is different from the hypermobility type. Your GP can refer you to local genetics, who are then able to refer on to either Sheffield Children’s Hospital EDS diagnostic centre (this sees adults as well) or Northwick Park diagnostic centre, depending on which is closer to you.
Not everyone who is referred to clinic will undergo genetic testing; it is only carried out when criteria are met for a rarer type or if there are signs of a different connective tissue disorder.
You can find more information in this article on genetic testing for the rare types of EDS. Please remember rule-out testing does not automatically occur after a diagnosis of hEDS; if you do not meet any criteria for a rarer type of EDS, the testing will not be carried out.
If you do receive a rare type of diagnosis, you will be supported by the clinic and management will be put in place.
If you are thinking about private genetic testing, please get in touch with the adviceline: adviceline@ehlers-danlos.uk who will be able to answer any questions surrounding this.
Management will be different for an individual depending on their symptoms or type of EDS or HSD. The usual management for someone with hEDS or HSD, for example, may include physiotherapy, OT, orthotics, and pain management; all of which can be referred to by your GP.
If you’re experiencing other issues such as gastro, urology or autonomic problems a referral to gastroenterology, urology or cardiology would be advisable. Usually, your GP will make a referral to local services. If they are unable to assist, a referral to an EDS-aware specialist may be required, and you can get in touch with the adviceline for assistance with this.
Self-management is often something a lot of individuals with EDS or HSD have to put in place. We have lots of suggestions to help manage your symptoms which can be found in our Information Hub. There are also fantastic webinars with talks from professionals which can also be helpful when learning about what management would best suit your symptoms. These can be found on our YouTube channel.
Your GP will oversee your care. If you do happen to be under rheumatology it is not unusual for you to be discharged after diagnosis, and often individuals end up overseeing their own care. We’re aware this is not ideal and would encourage support from the GP. You can send them to the GP toolkit to help them with overseeing your care.
Comorbidities is the name for other commonly occuring conditions in EDS or HSD. Your doctor should look at support and management for these in addition to your EDS or HSD if you are struggling with symptoms. Not everyone with EDS or HSD will suffer with comorbidities.
Many other conditions appear to commonly occur alongside the Ehlers-Danlos syndromes, particularly together with hypermobile EDS (hEDS) or the hypermobility spectrum disorders (HSD). Although an association has been demonstrated between hEDS/HSD and most of these problems, there is not yet enough scientific evidence to prove that one issue causes the other; this relationship is one that we may not understand until we find the gene or genes causing hEDS and HSD.
Among the ‘comorbidities’ that might present themselves along with hEDS/HSD are:
This is not an exhaustive list. It is important to note that not everyone with hEDS/HSD will have all or any of these problems, but they are possible. This section provides information and management advice on living with the comorbidities.
You do not have to have a diagnosis to claim PIP. PIP is based on the symptoms you’re experiencing and how they affect your day-to-day life. It is done on an individual basis rather than with regard to a specific condition. Many people with EDS or HSD do not meet the criteria for PIP and therefore would not be able to claim, but there are many who do.
Collecting as much evidence as possible – as well as impact statements from friends and family – can be helpful with your PIP application, to demonstrate the impact your symptoms are having. You can find out more about your eligibility for PIP here.
You can claim PIP even if you are working, and it often also entitles you to different benefits.
We have guides for claiming PIP and other nebefits provided by Benefits and Work. You can view them here if you are a paying member (make sure you are logged in)
We also have a series of webinars on our YouTube channel with Stu McGoo, Benefits Advisor.
We are currently able to provide benefit guides to members of EDS UK through Benefits and Work. We can only provide the guides for those who have a current membership. You can sign up here for free. If you are already a member of EDS UK, please visit this page to see which guides are available, as well as the email address to contact for copies.
We cannot currently help with completing the forms, but would recommend contacting your local Citizens Advice who would be able to assist with this.
If you are not awarded PIP and believe this decision to be incorrect, visit this page to see which guides we have that may help with your appeal process.
We are currently not able to provide advocacy services. Please do check your local council website for suggested advocacy services in your area.
We are not able to provide mental health support. Please contact your GP, emergency services on 999 or the Samaritans on 116 123 if you are having any struggles with your mental health. Additionally, you can text ‘shout’ to 85258 for 24/7 mental health support.
Our adviceline is open to everyone including non-members, carers, family, friends, and medical professionals. We can answer questions regarding diagnosis, management, comorbidities, benefits and more. Please don’t hesitate to get in touch if your question has not been answered on the website: 0800 907 8518 or adviceline@ehlers-danlos.uk
Please note: we cannot give medical advice.
Currently for schools we have our school toolkit: an excellent resource put together to advise schools on the best methods to support their students with EDS or HSD. This has information on the conditions themselves, reasonable adjustments, attendance, resources and more. We encourage the toolkit to be shared within the school for all who support your child.
We also have an infographic for students to give to their teachers and school/university.
UCAS has great advice on how to access support at university as well as advice on disabled student allowance. This can be found under advice and financial support on the UCAS website.
You can share our Employers Toolkit with them which has adice and resources they can access.
If you are office-based or work from home, you may want to look into Access to Work, a government scheme which allows equipment adjustments to help with your work environment. Find out more here.
Additionally, you are entitled to reasonable adjustments within your workplace from your employer if you are struggling, and you can find out more here. We would also recommend asking your employer to look on the EDS UK website to find out more about the condition, so they have an understanding. Especially as EDS or HSD can fluctuate.
There are several steps to putting in a complaint about the service you may have received within the NHS.
GP: First speak to the practice manager to see if the issue can be resolved internally. If this is not successful, you can contact your local integrated care board (ICB). You can find your local board by using this link. If you are not happy with the result from speaking to the ICB you can escalate your complaint to the Parliamentary and Health Service Ombudsman – find out more here. You can also/instead contact the General Medical Council if you wish to escalate this complaint.
Hospital: You are always entitled to a second opinion; you can ask your GP to put through a referral for you to see someone else or contact PALS at the hospital to ask this to be put through. If you would like to put a complaint in you can do this through PALS, the board of the hospital or you can contact the ICB (mentioned above). If you wish to escalate this further you can speak to the Parliamentary Health Service Ombudsman (mentioned above). You can also/instead contact the General Medical Council if you wish to escalate this further.
You can also ask your local MP to assist with accessing appropriate care if you are not receiving it, to see if they can help with pushing through a referral or chasing a complaint.
If you’d like to complain about a dentist or other service under the NHS, you can also go down the ICB route and/or the General Medical Council.
Putting in a complaint about a private service is different from the NHS. Your initial step would be to contact the manager of the service and ask what their complaints procedure is. The next step from here if the issue is not resolved would be to contact the Parliamentary Health Service Ombudsman.
In some instances, you may want to contact a solicitor, but this would be a personal preference.
You are always entitled to a second opinion; this can be requested through PALS or through your GP putting in another referral. Please remember that GPs are unable to refer out of their local trust. This might mean you are sometimes required to see local services first and then be referred on from there. Your GP can complete an individual funding form if they’d like this to be pushed through, to help get you referred out of area.
Medicinal cannabis prescriptions are legal in the UK. NHS prescriptions are very limited and only awarded to children and adults with severe and rare epilepsy, those having adverse effects to chemotherapy and individuals suffering from spasms and stiffness caused by MS. In the five years since medicinal cannabis has been made legal, only five prescriptions have been awarded. You can see more about the NHS’s information on medicinal cannabis prescriptions here.
You can get a private prescription for medicinal cannabis through clinics. Please research clinics beforehand to find one that is appropriate for you. The doctors will work with you to find a suitable prescription which gets reviewed when required. It is usually prescribed to be vaped or used as an oil (you cannot smoke a medicinal cannabis prescription product or grow your own plant at home). You can find out more surrounding the laws of medicinal cannabis here.
We have videos on our YouTube channel about medicinal cannabis for managing the symptoms of EDS and HSD
You must be logged into your membership to view them.
*We are not medically trained and can’t give medical advice.
