FAQ

May Awareness Month: EDS NZ News

What is EDS and HSD Awareness Month?

Each May, individuals worldwide demonstrate their solidarity with those living with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). While our collective mission remains crucial year-round, May serves as a time of unity, where we share experiences and emphasize the steps needed for progress.

Your contributions to our fundraising endeavours are truly priceless, and for that, we extend our deepest gratitude. Every dollar raised aids us in our commitment to supporting individuals with EDS/HSD in New Zealand. These funds facilitate ongoing assistance to our community through website resources, support calls, and participation in virtual events alongside the global EDS community, ensuring we stay abreast of the latest advancements.

Presently, we're collaborating on an EDSNZ Booklet in partnership with our esteemed Clinical Advisory Panel. Designed to aid the newly diagnosed, this booklet offers guidance through the early stages of diagnosis, outlining expectations and providing information on accessing healthcare and other essential services. Your May donations will significantly contribute to the timely release of this booklet, greatly impacting the lives of newly diagnosed individuals with EDS.

TO LINK TO THE EDSNZ FREE TALKS, EVENTS AND SEMINARS,  CLICK HERE.

Newly Diagnosed Seminar Details

Next Seminar is Friday 17th May at 10am.

This is a free seminar run by EDS NZ and our Clinical Advisory Panel. Jacquelyn facilitates this with Kelly, the President of EDSNZ.


Meeting link

meet.google.com/cpa-dyhb-ipp



About EDS / HSD

Why did Jacquelyn start EDS WellBeing?

Jacquelyn has been involved in the community since HSD and hEDS were called 'Joint Hypermobility Syndrome'. She was involved since 2007 with the Hypermobility Syndrome Association in the UK and began her Masters Thesis on JHS and Clinical Pilates in 2011. She then got busy looking after  patients and focused on that and moved to New Zealand where she recently took on the role of Clinical Lead with the Clinical Advisory Panel for EDS NZ. She is also involved in speaking opportunities with Ehlers-Danlos Society on an international level and has monthly meetings with the 'best of the best' in the EDS research/clinicians world. 

Her passion is evident when you meet her and seeing the need for specific care on a day to day basis (while waiting for specialist appointments), she started this clinic.

What Is Ehlers-Danlos Syndrome (EDS)?

Ehlers-Danlos Syndrome (EDS) is a group of inherited connective tissue disorders that affect the body’s ability to produce collagen. Collagen is an important component in the body’s skin, bones, joints, and blood vessels. EDS can cause hypermobile joints, fragile skin, abnormal scarring, easy bruising, hernias, and chronic pain.

What is Hypermobile Spectrum Disorder (HSD)?

Hypermobile Spectrum Disorder (HSD) is a condition closely related to Ehlers-Danlos Syndrome (EDS). While the symptoms of HSD may be similar to those of EDS, there is no definitive diagnosis for HSD. It is thought to be a milder form of EDS that does not meet the criteria for an official diagnosis of EDS, however it can be just as debilitating.

What is the prevalence of HSD/EDS?

EDS is considered a 'rare disorder' as it is cited as occurring 1:5000.  There is often debate as to the prevalence and if you talk with clinicians who are aware of HSD, hEDS and EDS, they will probably tell you it's higher! The rarer types of EDS would still however be considered rare.

This wonderfully written excerpt sums it up. Doctor Hakim and Doctor Francomano lead the clinicians meetings that Jacquelyn attends monthly (online with the UK/USA).

“In both community care and across a broad range of hospital specialties, many healthcare professionals (nurses, midwives, physical and other therapists, psychologists, and doctors) will likely attend to people with Ehlers-Danlos syndromes (EDS) or hypermobility spectrum disorders (HSD). The belief that EDS is rare or ultra-rare is true for several forms of the syndrome, but increasingly the hypermobile type of EDS (hEDS) is thought more common, and HSD much more common….Yet often the journey to diagnosis and treatment is challenging for patients, who may receive no diagnosis or misdiagnoses. In addition, misconceptions that the issues are solely mental health concerns are commonly reported. Too often there is more than a decade delay in diagnosis, and the negative impact on quality of life from living with under-managed disease is significant.…

With substantial growth in knowledge in the field, keeping up to date with advances in epidemiology, pathophysiology, and management of this heterogeneous group of conditions is challenging. No individual healthcare professional can truly manage all aspects of these conditions at an expert level. Care typically requires a holistic and multi-disciplinary approach. Yet such care, ideally embedded in the community, supported by subspecialty medical, therapies, and social care is lacking for EDS and HSD internationally. Currently, there are small numbers of expert clinics, centers, and networks striving to support patients and colleagues. Access to care is profoundly limited, yet management of many of the common concerns is well within the ability of most generalists with specialist support when needed.

Hakim AJ, Tinkle BT, Francomano CA. Ehlers-Danlos syndromes, hypermobility spectrum disorders, and associated co-morbidities: Reports from EDS ECHO. Am J Med Genet C Semin Med Genet. 2021 Dec;187(4):413-415. https://doi.org/10.1002/ajmg.c.31954.

What are the co-morbidities of EDS?

Due to its affect on collagen, Ehlers-Danlos Syndrome can also cause a number of co-morbidities related to connective tissue disorders. Common co-morbidities include chronic fatigue, dysautonomia (orthostatic intolerance), headaches/migraines, joint hypermobility syndrome, osteoarthritis, and digestive issues. You may have heard of the "trifecta": EDS; Postural Orthostatic Tachycardia Syndrome (POTS); and Mast Cell Activation Syndrome (MCAS). The combination of these three conditions can have a huge impact on your life.

How does Jacquelyn help those with EDS/HSD?

Jacquelyn specialises in working with people with EDS and HSD and their common co-morbidities to help them manage their pain with minimal lifestyle change. She brings together her knowledge from over 30 years of experience and her individualised approach to create a program that helps you take control of your life and get the most out of it without hiding behind your chronic illness.

Can I get diagnosed by Jacquelyn if I don't already have a diagnosis?

Yes. Jacquelyn is a qualified osteopath with extra training in EDS/HSD and can help with diagnosis of EDS/HSD. She also works closely with other medical professionals including GPs, rheumatologists, and orthopaedic surgeons to ensure that you have access to specialist care to rule out any other possible connective tissue or auto immune disorders to satisfy criterion 3 of the 2017 diagnostic criteria.

Can I get diagnosed if I am under 18?

Yes, Jacquelyn can diagnose EDS and HSD even if you are under 18. The EDS paediatric criteria allows diagnosis of EDS from six years of age. Jacquelyn works closely with parents, schools, healthcare providers to ensure that the individual receives comprehensive care. 

What is the difference between hypermobility and hyper mobile spectrum disorder?

Hypermobility is a term used to describe people with an increased range of movement in their joints. This can be seen as being ‘double jointed’. Hypermobile Spectrum Disorder (HSD) is closely related to EDS but it can be just as debilitating. You can have generalized or peripheral joint hypermobility without the symptoms of EDS and HSD.

I've been told by my doctor that I have a high Beighton score but I do not have EDS. What does this mean?

The Beighton Score is a simple tool used to measure joint hypermobility. It is not an accurate indicator of whether or not someone has EDS or HSD as these conditions have other criteria that must be met to make a diagnosis. A high Beighton score can mean you are very bendy, but it does not necessarily mean you have EDS or HSD.

Equally, the 2017 Diagnostic Criteria takes into account that we all 'stiffen up' with age and it will be acknowledged if you would have previously scored highly on the Beighton Score. This may be taken into consideration when diagnosing EDS/HSD.

About Your Appointment

How To Cancel My Appointment Online

If you need to cancel OR reschedule, the easiest way is to use the link on your email. BOTH the confirmation and reminder emails have this link and it stays live until 24 hour PRIOR to your appointment. 


After this time, you'll need to email us at admin@edswellbeing.com as there are fees associated with late cancellations.

Do I need a referral from my GP?

No, you do not need a referral from your GP to see Jacquelyn. Jacquelyn will liaise with your GP and any other healthcare providers. This is part of any of the packages and included in the initial consultation.

What should I expect when I work with Jacquelyn?

Jacquelyn takes a comprehensive approach to help her clients manage their complex pain conditions. She understands the importance of providing comprehensive care for her clients and as such the packages she offers are individualised to meet the needs of each patient.

Although she is a registered osteopath with the Osteopathic Council of New Zealand, she considers herself an EDS/HSD practitioner and takes an holistic approach.

What if I have questions?

Clinical questions are not able to be answered on email.  This is for your safety.

Most of your questions will be answered via these FAQ. 

If you have any admin questions, please send through to admin@edswellbeing.com.

Do you offer online consultations?

Yes, Jacquelyn offers online consultations for people who are unable to attend face-to-face appointments.  Many patients wish to access her services from all over New Zealand.

These are encrypted video sessions that can be carried out from the comfort of your own home.

You will be sent a link to use. 

If you'd prefer, telephone options are also available. 

Can I bring someone with me to my appointment?

Jacquelyn recommends bringing a family member or friend to the appointment. Having someone by your side can be beneficial as they can take notes and ask any questions you might forget. With conditions like EDS or HSD, each day can be unpredictable. However, bringing a support person ensures that you receive the best treatment tailored to your specific needs on that particular day.

What is the Investment financially?

Your initial appointment covers the following:

  • the preparation time for Jacquelyn to read through your medical reports
  • the preparation time for Jacquelyn to read through your online forms (which will be sent to you prior to your session)
  • follow-up comprehensive reports of up to three of your team of medical practitioners including to the referrer (as appropriate).
  • in-session detailed discussion of your medical history and current symptoms. A discussion will be had as to what is the most important at the time of meeting Jacquelyn as she knows that the effect on your health can change rapidly. You get to choose what you'd like to focus on.
  • Lifestyle evaluation
  • Goals evaluation and forms in session
  • Physical assessment of joint mobility, muscle strength and physical ability
  • Hands-on assessment and treatment (if time permits and if appropriate). This option will be discussed in session as Jacquelyn knows it depends on how you're feeling on the day. 
  • Jacquelyn has vast experience in the field of EDS/HSD and is aware that adaptability on the day is vital to the patient/practitioner relationship and trust for a patient who has this connective tissue disorder. 


Before we begin working together, it is important for me to have a clear understanding of your unique needs and challenges. That's why all my clients start with an initial assessment.

We will then discuss the package options for you. These include options for payment plans and packages that are tailored for your needs based on geographical location, type of EDS or 'wish list'.

The investment for the Initial Consultation is $380. 



What to know before my appointment

Perfume: Please don't wear perfume or aftershave to your appointment. This is for the comfort of those patients who are sensitive and have mast cell sensitivities. 


Shoes: We ask you to leave your shoes inside on the shelf as you enter. Keeps our clinic clean. We suggest socks in Winter!


Parking: There are a limited number of carparks within the clinic grounds. If no carparks are available we advise to park on Molesworth Drive. Please don't park directly outside on Pearson Street as this blocks the traffic!


Payment: Payment can be made using debit, credit or cash. EFTPOS is available.

How do I get my medical notes for my INITIAL APPOINTMENT?

1. If you have Manage My Health, take screenshots and label them. Send them through to admin@edswellbeing.com

2. Scan/take photos and label any paper notes you have and send through through to admin@edswellbeing.com. Do not bring paper copies to your appointment.

3. Contact your GP admin team and ask if they can email you through your medical notes, scans and reports. Note that this takes much longer than the above two options so allow more time before you book your INITIAL APPOINTMENT. Email to admin@edswellbeing.com.


PLEASE NOTE: Jacquelyn needs these medical notes minimum one week prior to your appointment TO ALLOW FOR PREP TIME.

Does Jacquelyn take patients as a one-off?

You have the option of a CONNECT or TELEHEALTH session as an introduction. 

Each patient is allowed one of these and must then do the Initial Appointment. This allows for: 

a) safe and comprehensive assessment of your medical history

b) ensures that it's appropriate to investigate for HSD/EDS

c) allows you to meet Jacquelyn to see if it's a good fit!


* Please note: It is not possible to give sufficient service/care for a HSD/EDS patient on a one off basis the way Jacquelyn works. She does a large amount of work outside your sessions which includes letters, research and meetings on your behalf. This therefore means that you need to do the INITIAL APPOINTMENT and the packages before working with her on a casual basis.

What happens after the Initial Appointment and Packages?

After the INITIAL APPOINTMENT, you'll be sent an 'offer' to work with Jacquelyn based on your needs. This is bespoke.

It will consist of one of the packages below. Please read through the options.

After the duration of the packages, it is expected that you'll then have a multi-disciplinary team set up who have liaised with Jacquelyn and you.

Anyone who has finished their package sessions, may do individual sessions or continue with a programme that is also bespoke. These individual sessions (after you've been through a Package programme) are $150 Private or $100 ACC (as appropriate).


* Please note: It is not possible to give sufficient service/care for a HSD/EDS patient on a one off basis the way Jacquelyn works. She does a large amount of work outside your sessions which includes letters, research and meetings on your behalf. This therefore means that you need to do the INITIAL APPOINTMENT and the packages before working with her on a casual basis.

What happens after the packages have ended?

After your bespoke packages have been completed, you are welcome to do MAINTENANCE SESSIONS. 

These appointments are scheduled for 40 minutes as follow-ups for patients who have finished one of our packages.

Whether private or ACC-funded, the treatment cost will be determined in session with a discussion between you and Jacquelyn.

The fees for these sessions encompass administrative tasks before and after, as well as any referral correspondence generated during the session.

Private: $150
ACC: $100


pACKAGES

Package 1: The newbies package

The Starter Guide is perfect for those newly diagnosed or suspecting EDS/HSD. It offers a comprehensive starting point for understanding your specific manifestation of EDS/HSD and provides a kick-start to managing your condition effectively. 

*The cost of the initial assessment is separate to the package. All packages are subsequent to an initial assessment session of 80 minutes.

Included in Package 1 is the following: 

  • Development of a ‘Thrive’ Plan by Jacquelyn ready to implement in the physical sessions
  • 4 -6 x 40 minute follow-up sessions done fortnightly to implement your personalised 'Thrive' plan.
  • The sessions include time for questions, physical assessment, hands on in the form of rehab or osteopathy.
  • Email access to Jacquelyn during the period of working together on the Package.
  • Management of your referral network will be done simultaneously.
  • Email access is available whilst on the package.
  • You may be able to have additional osteopathy sessions at ACC or Private rates (as appropriate) whilst you are on the package. These are charged separately as they are dependent on ACC/Private eligibility. 

Thrive investment: $TBC. 

Payment plans are available. Please email us. We're here to help.


Please note that this is an example of what a package/project might look like. Each one is tailored to the patient based on needs.

Package 2: The Comprehensive EDS/HSD Management Programme

A designed program for individuals with EDS/HSD, providing holistic management.  This is for patients who have had their diagnosis for a minimum of six months prior to working with Jacquelyn and seek a bigger picture approach. 

This is not for those who wish to use a ‘mop-up’ approach to their diagnosis and who don’t wish to focus on thriving.

Included in Package 2 is the following:

  • Development of a ‘Thrive’ Plan by Jacquelyn ready to implement in the physical sessions.
  • 8 x 40 min follow-up sessions done fortnightly to implement your personalized 'Thrive' plan.
  • Email access to Jacquelyn three times per week Tuesdays - Thursdays.
  • The sessions focus on development a ‘team’ approach looking at the co-morrbidities as well as the skeletal implications of the EDS/HSD diagnosis. 
  • Each session can be used for development of problem-solving, physical assessment (patient directed) and hands-on in the form of rehab or osteopathy.
  • These sessions focus on a medium term plan for strategy implementation across  all the health implications of EDS/HSD.
  • The sessions are designed to be used fortnightly BUT due to the nature of EDS/HSD, they can be flexible to meet individual needs.
  • Email access is available whilst on the package.
  • You may be able to have additional osteopathy sessions at ACC or Private rates (as appropriate) whilst you are on the package. These are charged separately as they are dependent on ACC/Private eligibility. 

Thrive investment: $TBC


Payment plans are available. Please email us. We're here to help.


Please note that this is an example of what a package/project might look like. Each one is tailored to the patient based on needs.

Package 3: Intensive

This program is designed for individuals who require a more intensive approach to managing their condition due traveling a longer distance to work with Jacquelyn OR who wish to deep-dive into their EDS/HSD wellness plan.
It includes the following: 
  • 6 follow-up sessions (40 minutes each) which can be taken up to 3 x per week via in-person OR TeleHealth
  • These sessions are for the patient who wishes to understand as much as possible in a short amount of time.
  • These are for patients whose personality thrives on focusing on big goals fast!
  • Email access is available whilst on the package.
  • You may be able to have additional osteopathy sessions at ACC or Private rates (as appropriate) whilst you are on the package. These are charged separately as they are dependent on ACC/Private eligibility. 

Thrive investment: $TBC

Payment plans are available. Please email us. We're here to help.


Please note that this is an example of what a package/project might look like. Each one is tailored to the patient based on needs.

package 4: Children and Teens

Our program is designed for children and teens with EDS/HSD OR who need a diagnosis using the Paediatric Diagnostic Criteria.
These sessions are also used for family support of the child/teen and invite family (whānau) members to attend via physical or TeleHealth presence. 
This package is designed to focus on preventative measures and to set up a plan for maximum ‘thrive’ for your child early in life. This then ensures the best care possible is given to your child.
You receive: 
  • Four follow-up sessions (40 minutes each) including both hands-on treatment and physical pre-hab (exercise prescription and modifications strategies)
  • A ‘what to watch out for’ plan for your child’s development
  • A ‘when to be concerned’ specific checklist for you and your child to manage their care until they are old enough to be assessed using the adult criteria.
  • Four liaison reports to work with the child’s school/college, sports teachers, health care providers and/or GP.
  • Email access is available whilst on the package.
  • You may be able to have additional osteopathy sessions at ACC or Private rates (as appropriate) whilst you are on the package. These are charged separately as they are dependent on ACC/Private eligibility. 
Thrive investment: $TBC


Payment plans are available. Please email us. We're here to help.


Please note that this is an example of what a package/project might look like. Each one is tailored to the patient based on needs.

CO-TREATMENTS WITH YOUR TEAM

Working with your Health Provider

Working with patients with  EDS or HSD can present unique challenges due to the variability and complexity of symptoms, as well as the potential for comorbidities.

Managing patients with EDS/HSD requires a multidisciplinary approach involving various healthcare professionals to address both the primary symptoms and associated comorbidities effectively.

One of the challenges in managing EDS/HSD patients is the lack of awareness and understanding among healthcare practitioners regarding the condition's nuances and complexities. This can lead to incorrect advice or treatment approaches that may not be suitable or could even exacerbate the patient's symptoms.

Therefore, education and awareness among healthcare professionals about EDS/HSD are essential to improve patient care and outcomes.

Jacquelyn offers this approach for best practice.

Furthermore, open communication and a collaborative approach between patients and healthcare providers are vital to ensure that patients receive accurate information, understand their condition, and actively participate in their care management. Empowering patients with knowledge about EDS, self-management strategies, and available support resources can also enhance their ability to cope with the challenges associated with the condition.

In summary, while working with EDS/HSD patients can be challenging, especially those with complex comorbidities, a multidisciplinary approach, education, awareness, personalised care plans, and effective communication are essential to optimise patient outcomes and quality of life.

Additionally, ongoing research and advancements in understanding EDS/HSD can further improve the management and care of affected individuals. As Jacquelyn attends monthly international meetings with the leading experts in the field, she is up to date with latest research and can implement that with her patients.

You may choose to have a co-session with any of the following: osteopath, chiropractor, physiotherapist, acupuncturist, massage  therapist or whomever you choose!

The more education, the better treatment you'll get. 

BOOK A CONNECT SESSION.

Jacquelyn strongly recommends attending the next Newly Diagnosed Seminar, provided by EDSNZ. Details of this are at the top of this page.

* Each patient is allowed one CONNECT SESSION and any further care is done via INITIAL APPOINTMENT and then PACKAGES.  After this time, single sessions may be used.



ACC

Do I need an ACC number before my Appointment?

Yes, we can lodge an ACC claim for you. This allows you to have your injury assessed and treated immediately.

You do not need a referral to the GP. There are criteria that need to be met and these will be discussed with your practitioner to make a decision on ACC eligibility

What if I already Have an ACC number?

Bring your ACC45 number with you. It's a number that looks something like this.  AB12345

We will also need your date of accident and details. 



Ready To Get Started?

Book your initial appointment with me now. Together we will discover how you can go beyond merely living with EDS or HSD and THRIVE.