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How medical cannabis can help in Ehlers-Danlos syndromes

EDS affects different people in different ways and symptoms can range from relatively mild to totally disabling.

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woman with joint pain Ehlers-Danlos syndromes
EDS are a group of rare conditions that affect connective tissue, such as skin, joints and blood vessel walls.

Experts at Integro Medical Clinics explain how cannabis medicines can offer relief in managing the symptoms of Ehlers-Danlos syndromes.

Ehlers-Danlos syndromes (EDS) are a group of rare inherited conditions that affect connective tissue – primarily your skin, joints and blood vessel walls.  Connective tissues provide support in skin, tendons, ligaments, blood vessels, internal organs and bones. 

People who have EDS usually have overly flexible joints and stretchy, fragile skin.

There are several different types of EDS and some may share the same symptoms. It can affect different people in different ways and symptoms can range from relatively mild to totally disabling.

The different types of EDS are caused by faults in certain genes and depending on the type of EDS, the faulty gene may have been inherited from 1 patient or both or may not be inherited at all and simply occur.

In total there are 13 types of EDS with hypermobile EDS (hEDS) being the most common. 

Hypermobile EDS patients may have joint hypermobility, which leads to extreme tiredness, joint pain and loose unstable joints that can dislocate easily. Their skin may bruise easily and they can suffer with dizziness, digestive problems and issues with internal organs and bladder control. 

Classic EDS is less common and tends to affect the skin more. Sufferers may have stretchy and fragile skin that tends to be smooth and velvety and bruises easily. Wounds are slow to heal and leave wide scars. Again, there is joint hypermobility and loose unstable joints which are quick to dislocate. They can suffer hernias and organ prolapse.

Vascular EDS is very rare and is the most serious. It affects the blood vessels and internal organs which can cause them to split open and can lead to life threatening bleeding.

Kyphoscoliosis EDS is again rare and will affect the curvature of the spine and this will start in childhood and often gets much worse in the teenage years.

Female EDS patients often suffer gynaecological issues. They are more prone to menorrhagia (heavy menstrual bleeding), dysmenorrhea (painful menses), irregular menses and dyspareunia (pain in relation to sexual intercourse).  There is also a higher rate of vulvar disorders and pelvic organ prolapse.

There is no one specific treatment for EDS but it is possible to manage the symptoms with support, through a variety of approaches. Occupational therapists can help manage daily activities with advice on equipment and physiotherapists can give sufferers exercises to help strengthen joints and manage pain.

For some types of EDS regular hospital scans can detect problems with internal organs and cognitive behavioural therapy can help to cope with depression and suffering long term pain can bring.

Dr Anthony Ordman

Dr Anthony Ordman

Taking cannabis medicines can be extremely helpful for some EDS sufferers and can lead in some cases to a marked positive improvement in quality of life and management of day-to-day symptoms. 

“EDS are an extremely complex and interesting range of conditions, that we are only just starting to understand,” Dr Anthony Ordman, senior clinical adviser and hon. clinical director at Integro Medical  Clinics explained.

“Sufferers have genetically different connective tissue which makes everything stretchy and hyper mobile. They also seem to have a genetic predisposition to pain processing circuits of the spine and bran (central nervous system) becoming hyper excitable on a long-term basis. There by flaring up the experience of pain for the patient. What we know about the way cannabis medicines work is that they can help to settle down these circuits and re-balance them in a way most conventional medicines are unable to do.”

Sophie Hayes specialist cannabis nurse at Integro Medical Clinics added: “People living with EDS are managing a multitude of symptoms and conditions. These are painful, exhausting, and require a great deal of life planning in order to feel prepared to engage in activities such as work, study or socialising with peers.

“Cannabis medicines are very useful in the management of chronic pain, particularly in EDS. Individuals may be experiencing inflammatory, nerve and muscle pain all at once, and cannabis medicines are well suited to this multi-symptom type of management.” 

Integro Medical Clinics Ltd always recommend remaining under the care and treatment of your GP and specialist for your condition, while using cannabis based medicines, and the Integro clinical team would always prefer to work in collaboration with them.

If this article has been on interest, you are invited to join a free webinar on Wednesday 12 May at 7pm, exploring the role of cannabis medicines in women’s health.

Expert speakers Dr Sally Ghazaleh, Sarah Higgins CNS, women’s health lead for Cannabis Patients Advocacy and Support Services (CPASS) and endometriosis patient’s Abby Hughes and Jessica* of The Endomonologues will candidly discuss this new field of medicine.

The event is hosted by Cannabis Health, Integro Medical Clinics and CPASS, sign up for free here

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New grant funds for “life changing” medical cannabis prescriptions in Jersey

Jersey residents can now apply for a grant from the Sapphire Medical Foundation

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Jersey residents can now apply for a grant to fund a medical cannabis prescription, from the UK’s only medical cannabis charity, Sapphire Medical Foundation.

Thanks to new funding, patients on the island of Jersey can now apply for a grant to fully support a medical cannabis prescription.

Those selected who meet the eligibility criteria, will have their  prescriptions and clinic appointments be paid for by the Sapphire Medical Foundation for a minimum of one year.

Medical cannabis was legalised for prescription in 2018 across the UK, since then the growth in patient numbers paying privately for treatment has risen exponentially.

Eligible patients can seek treatment for conditions including chronic pain, neuropathic pain, generalised anxiety disorder and fibromyalgia.

In Jersey, there are now an estimated 3,000 patients prescribed the treatment via private clinics, such as Sapphire Medical Clinics.

The cost associated with prescriptions for medical cannabis can be a barrier to what is for some people a life-changing medication.

As a result, some patients are faced with the decision between prioritising their health or other necessities – never more so than in the current economic squeeze with living costs rising.

Sapphire Medical Foundation’s mission is to reduce the economic barriers of access to medical cannabis. It was founded to relieve financial difficulties that can affect individuals who are unable to afford the costs associated with medical cannabis prescriptions.

No other charity in the UK exists with the sole purpose of alleviating the monetary burden that comes with cannabis-based treatment. Thus, the Sapphire Medical Foundation presents the only legitimate option for medical cannabis access for hundreds, if not thousands of individuals.

Kirran Gill was the first patient in the UK to receive support from the Sapphire Medical Foundation for rheumatoid arthritis, fibromyalgia and anxiety and says that because of treatment, her pain levels have been significantly easier to manage and the severe side effects from using conventional treatment (such as opioids) are less severe.

Additionally, her appetite, nausea, anxiety, and overall mood have improved. Access to medical cannabis has greatly impacted her life in a positive way.

Dr Simon Erridge, co-founder and trustee of Sapphire Medical Foundation commented: “We want to help as many patients as possible in the Island community and thank those who have made this new funding round possible.

“We are delighted to invite residents who meet our stringent grant making criteria to apply for support to access medical cannabis for a minimum of one year.”

This grant round opens to Jersey applicants on the 17 May 2022, closing 6th June 2022. Applications are open to both existing medical cannabis prescription holders, and patients who otherwise meet the grant-making criteria but have not accessed treatment to date.

Applications can be made on Sapphire’s website. All grants are made following a thorough assessment of eligibility and in accordance with fair and transparent grant making principles to available here.

The Sapphire Medical Foundation provides financial assistance to cover the costs of treatment for a minimum of one year for each patient who receives one of the grants.

Sapphire Medical Foundation will launch an additional grant round in summer 2022 which shall be open to all UK patients and those in the Channel Islands.

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Research to shed light on how UK clinicians view medical cannabis

UK medical professionals are invited to take part in a new ​​outreach project

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Psychology student and addiction expert, Hallie Heeg, is collaborating with Drug Science on the project

A new research project aims to get to the bottom of why many UK clinicians are still reluctant to prescribe medical cannabis.

Medical cannabis patient and psychology student, Hallie Heeg, is inviting UK medical professionals to participate in a new ​​outreach project, which aims to shed light on their views and knowledge around prescribing medical cannabis.

Heeg, who is originally from the US, has more than a decade of experience working in the field of addiction and eating disorder recovery – which enlightened her to the role cannabis can play in holistic healing.

After entering recovery from an eating disorder herself in 2006, Heeg began managing rehab clinics and went onto work for the Hazelden Betty Ford Foundation, the largest non-profit addiction and mental health programme in the States. 

“In the addiction field it’s drugs or no drugs, it’s very black and white, but I started seeing people who were sober, using psychedelics for trauma work in a clinical way – but they were having to keep it hidden,” she says.

“I got really frustrated by that, because if as clinicians, their creed was to do no harm and to put the patient first, we should be looking at all these different types of modalities and different medications and not just putting our beliefs into one.”

Heeg self-medicated for many years before accessing a cannabis prescription, finding that it helped ease her anxiety and quieten the negative thoughts of her eating disorder. 

“I’ve used it throughout the years, but more from a recreational perspective,” she explains.

“[When I got my prescription] I started seeing my anxiety decrease, I started seeing the negative thoughts going away and I was having a healthier relationship with food. Slowly I was able to reduce the prescription drugs I was on.”

The question of why

Moving to the UK after meeting her husband, Heeg got a coaching certificate and founded her own coaching and intervention service, WeRise, to continue supporting patients through recovery. Last year, she went on to enrol on a Masters programme in psychology at the University of East London.

For her dissertation she has collaborated with the UK’s drug reform charity, Drug Science, to try to understand the attitudes of clinicians towards medical cannabis.

“There are something like 1.4 million medical cannabis users in the UK, however, that’s typically those who have to source it from the illegal market,” she says.

“I really want to understand why people aren’t prescribing and why the numbers on the illicit market are so big in the UK, but yet the amount of medical cannabis users being able to access it legally is so small.”

The first step in the project is a five minute, anonymous survey for doctors and prescribing nurses across the country.

“There are not a lot of studies around medical cannabis in terms of doctor’s knowledge, particularly in the UK, because it is so new,” says Heeg.

“Myself and Drug Science are hoping to raise awareness around this and from a patient advocate standpoint, but equally from a medical and research standpoint, help inform them on how they could actually become prescribers.”

She adds: “It will also help us with making decisions and determining policies, by really understanding what the views of the medical community are, why they believe this and how we can debunk any myths around it.”

Hallie Heeg has worked in addiction for over a decade

Medical cannabis and eating disorders

After completing her Masters, Heeg plans to open her own eating disorder clinic and treatment centre. 

Having seen the benefits of medical cannabis both personally and through her clients, she would like to see more research and discussion around its use in these conditions.

“I really have seen great results with it, typically in anorexics and bulimics, and my hope is that we can play a part in doing more research around that,” she says.

“Every week we hear about how eating disorder services are in crisis, there’s a shortage of beds, the number of adolescents struggling is rising – it’s the number one mortality among any mental illness. And yet we don’t seem to put a lot of effort into research around that when it comes to medical cannabis.”

However, her colleagues in the field – and that of addiction – have been reluctant to engage so far.

“When I sent my survey out to those contacts, I got several responses back saying ‘I work in addiction, why would I take the survey?’ And since I sent it out to my eating disorder network, I haven’t gotten a response back,” says Heeg.

“It feels a little vulnerable for me to kind of put this research out there, because there’s a community that I’ve been a part of that also looks at it as this gateway drug.”

She adds: “It’s been challenging, to be honest with you, to find clinicians who are even interested in taking a survey with the word medical cannabis in.”

Doctors and prescribing nurses in the UK can complete the anonymous survey here

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Fibromyalgia diaries: Travelling as a medical cannabis patient

Medical cannabis patient, Julia Davenport, on the challenges of travelling with a prescription.

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South Africa remains one of fibromyalgia patient Julia Davenport's favourite places - but getting there isn't always easy.

While cannabis oil has dramatically improved fibromyalgia patient Julia Davenport’s quality of life, it has brought with it new challenges when it comes to travel, as she explains here.

Chronic pain has a nasty habit of getting in the way of doing the things you love.

My big passion which I share with my husband, and I guess our one extravagance, is jetting off to far flung places.

Over the years, however, fibromyalgia, arthritis and aching joints have conspired to make travelling evermore arduous.

Now in my 70s with various replacement parts, difficult terrain is one of the biggest barriers to exploring new places.

Certainly, my husband’s bucket list destination, the Galapagos Islands, is on my no-fly list. I would have adored to go there at some point, but navigating those volcanic rocks, even with my walking stick, would be a nightmare.

Fibromyalgia: A banner advert for the medical cannabis clinic

Familiar holiday spots closer to home are also becoming increasingly inaccessible. Every year our extended family visits the same Northumberland cottage, which is at the bottom of a steep bank.

In years gone by, I’d be fine to walk down to it through the working farm in which it stands. Now, because my back and shoulders have deteriorated, I have to drive right to the door.

Finding ways to compensate for the things you can no longer do is a constant theme with chronic pain conditions.

Aside from mobility challenges, another restriction on travel with rheumatological conditions can be the weather, and humidity can play havoc with chronic pain. I’d love to go to Central America, for example, but I just couldn’t tolerate the heat and humidity.

Having said that, although hot dry weather is far better than the cold British winter, the difference is not enough to drag me away from my family at Christmas time.

For all my gripes about life on the road, though, traveling remains my great joy, and discovering medical cannabis and CBD has definitely helped; although it’s not all plain sailing.

Travelling with medical cannabis

In November I’m returning to South Africa, a place I’ve visited a few times and which has a special place in my heart.

On previous visits, because we’ve flown via Dubai, I’ve not taken medical cannabis or CBD with me.

There is no way I’d risk taking cannabis with me to the UAE, where people have apparently been arrested and put in jail for having codeine, never mind anything else, despite having a prescription for it.

They have a ridiculously long list of substances that they deem addictive which you can’t have. There are things you can apply for permission to take, but I just wouldn’t trust that I wasn’t going to get arrested.

When we’ve flown long-haul through Dubai in the past, I would tend to take enough medication just for the journey. I have even flushed pain medication down the toilet on a connecting flight to Dubai just to make sure I’m not in possession on arrival.

I’ve then managed to pick up cannabis products quite easily in certain final destinations.

In South Africa there was a shop similar to a Holland and Barrett which sold CBD products legally. They were able to match the equivalent of what I was already taking to their products.

In Japan, it was also relatively easy to buy CBD over the counter, even with the language barrier.

In the past, the ease at which you can buy CBD has definitely influenced my travel choices. There are lots of countries that I’d give a wide berth to because of their approach to medication, which is often underpinned by false views on addiction.

At the same time, with so many countries opening up to CBD, travelling is getting easier and the main challenge is the routing of flights through the Gulf.

Thankfully on my next trip to South Africa we are travelling direct to Cape Town directly so I can rest easy that I won’t end up behind bars.

Guidance for travelling with medical cannabis

Some countries allow medicinal cannabis and some even recreational cannabis. Some allow CBD but others do not.

Guidance from the Medical Cannabis Clinicians Society recommends that patients always contact the embassy to check the legal situation in the country they are visiting before travelling with medical cannabis.

 Some countries require a letter of proof from a clinician, some require a request to be submitted to the embassy requesting to travel, some restrict the amount of medication you are able to travel with, i.e. up to 30 days supply. It is suggested that any guidance is sought and confirmed in writing.

It is advised that travellers keep medication on their person, stored in its original packaging along with a copy of their issued prescription and relevant corresponding paperwork. 

You can get an idea of the country’s stance on cannabis initially by searching for “legality of cannabis” on Wikipedia – but always check with the embassy as well.

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