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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 Laura 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

News

Science finds a way for medical cannabis to relieve pain without side effects

Researchers have developed a molecule that allows THC to fight pain without the side effects.

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Many people living with chronic pain have found that cannabis can provide relief. 

Scientists may have developed a molecule which could allow medical cannabis to provide pain relief without any side effects.

Many people live with chronic pain, and in some cases, cannabis can provide relief. 

But the drug also can significantly impact memory and other cognitive functions. 

Now, researchers have developed a peptide that, in mice, allowed THC to fight pain without the side effects.

According to the US Centres for Disease Control and Prevention (CDC) around 20 percent of adults in the states experienced chronic pain in 2019. 

In some studies, medical cannabis has been helpful in relieving pain from migraines, neuropathy, cancer and other conditions, but the side effects can present hurdles for widespread therapeutic use.

Previously, researchers identified two peptides [molecules which are made up of amino acids] that disrupt an interaction between a receptor that is the target of THC and another that binds serotonin, a neurotransmitter that regulates learning, memory and other cognitive functions. 

When the researchers injected the peptides into the brains of mice, the mice had fewer memory problems caused by THC. 

Now, this team, led by Rafael Maldonado, David Andreu and colleagues, has gone one step further to improve these peptides to make them smaller, more stable, orally active and able to cross the blood-brain barrier.

Based on data from molecular dynamic simulations, the researchers designed two peptides that were less than half the length of the original ones but preserved their receptor binding and other functions. 

They also optimised the peptide sequences for improved cell entry, stability and ability to cross the blood-brain barrier. 

Then, the researchers gave the most promising peptide to mice orally, along with a THC injection, and tested the mice’s pain threshold and memory. 

Mice treated with both THC and the optimised peptide reaped the pain-relieving benefits of THC and also showed improved memory compared with mice treated with THC alone. 

Importantly, multiple treatments with the peptide did not evoke an immune response. 

Reporting in the American Chemical Society’s Journal of Medicinal Chemistry, researchers say that these findings suggest the optimised peptide is an ideal drug candidate for reducing cognitive side effects from cannabis-based pain management.

The abstract that accompanies this paper can be viewed here.

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Health

Dutch Government to supply medical cannabis for UK patients until 2022

The Department of Health has reached an agreement to continue the supply of Bedrocan oils

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The Dutch Government will supply medical cannabis to UK patients until 2022

The Department of Health has reached an agreement with Dutch officials to extend the supply of medical cannabis oils to existing patients in the UK until 2022.

Medical cannabis patients, living with severe, life-threatening epilepsy were left without access to medication when the UK left the EU at the end of last year. 

Families, whose children are prescribed Bedrocan oils in the UK but must obtain their prescription through the Transvaal pharmacy in the Netherlands, were given two weeks notice that their medication could no longer be dispensed following the end of the Brexit transition period on 31, December 2020. 

After outrage from campaigners, the Dutch government agreed to continue supplying the life-saving products until 1 July, 2021 while a more permanent solution was reached.

This waiver period has now been extended until 1 January, 2022.

Health ministers promised to work with officials in the Netherlands to find a “long-term” solution, but according to those at the forefront of the campaign, there is still “some way to go”.

Hannah Deacon and son Alfie Dingley

Hannah Deacon’s son Alfie Dingley, who is prescribed Bedrocan products for a rare form of epilepsy, recently celebrated one year seizure-free.

In a letter to Deacon on Thursday 13 May, the DofH said it was working with the Dutch government, Bedrocan and the Transvaal pharmacy to proceed as “quickly as possible” with the UK production of these medicines.

It added that domestic production is “complex” and that manufacturing “unlicensed herbal medicines” comes with “significant challenges”. 

Deacon said that the UK production of Bedrocan products was the “only solution”.

While other cannabis-based medicines are available in the UK, experts have warned that there is ‘significant variation’ from one product to the next and switching an epilepsy patient’s treatment could be ‘life-threatening’.

“With the 1 July deadline for Bedrolite supply to cease from the Netherlands looming ever closer, we made it clear we wanted an extension to the agreement to stop the situation becoming dangerous for Alfie and the other patients receiving this vital medicine,” commented Deacon.

“The long term solution of Bedrocan products being made in the UK still has some way to go, but it can be the only solution and we thank everyone who is working very hard to achieve this. 

“This is still a long way off from being okay, but for now we have the pressure taken off on the supply issue.”

With limited access to medical cannabis on the NHS, families are still calling for the Government to help fund their children’s prescriptions, which can cost thousands of pounds each month.

Deacon added: “The ever-pressing issue of financial burden on the many families and patients wishing to use medical cannabis in the UK remains and this is a huge issue which needs dealing with.

“There are many ways in which the Government could step in and help access for very vulnerable people and we will continue working as hard as we can to make things better for all.”

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Mental health

“It made me feel human again” – Medical cannabis and anxiety

Sylv reveals how medical cannabis is helping her manage severe anxiety brought on by the pandemic.

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Sylv's anxiety worsened during the coronavirus pandemic

Struggling with severe anxiety brought on by the pandemic, Sylv has spent the last year taking anti-depressants, which caused acute side effects and withdrawal symptoms. Now she is taking medical cannabis, which she says is “making her feel human” again.

“My anxiety wasn’t horrific until the start of the pandemic,” says, Sylv, 41.

Sylv has suffered from anxiety for a number of years and has learned how to manage the condition and keep her mental health under control.

But in March last year, as the country was plunged into lockdown, she was hit with a wave of anxiety that she hadn’t experienced before.

She was taking the beta-blocker, propranolol, at the time. It was “perfect” for managing her anxiety, but would often trigger her asthma, a common side effect of the drug.

As Sylv sat at home “wheezing” from her asthma, she started to panic, believing she had caught Covid-19.

From there, she says, her mental health began to spiral out of control. She soon found that things as simple as going shopping, would leave her crippled with anxiety.

“The fear I had about leaving the house and going out was what affected me the most,” Sylv says.

“It became so strong that I felt uncomfortable touching things and I would get so anxious that it would make me nauseous.

“At one point I was in the queue at a shop, and somebody was standing too close behind me. I came home and I burst into tears.”

Sylv tried multiple medications before being prescribed Venlafaxine, a strong anti-depressant that came with an array of “awful” side effects.

After being signed off from work for six months, Sylv rarely left the house for fear of triggering her anxiety and, as a result of her medication, started experiencing nausea, headaches and insomnia. She would regularly be awake for 36 hours at a time.

Sylv worked as an admin assistant for a care agency. Due to the nature of the job, it was impossible for her to work from home.

In November, she says she felt ready to try to return to work again.

“It was very hard having to go to work in those circumstances. I did try and get a bus in one time, but it was horrible,” she says.

Caring for the elderly on a daily basis meant talk of the pandemic was all around her, which only fed into her anxiety.

“We had some clients and staff members that had Covid, so when I was at work it was constantly being mentioned. It was just continuous, 24/7, it was all that was talked about,” she says.

Sylv managed to work for two months until it became too much. The Venlafaxine was “dulling” her brain to the extent that she wasn’t able to focus on her work and she was signed off sick again in January.

Shortly after going on sick leave, Sylv’s doctor increased her dose of venlafaxine to 225 mg. This time, she noticed problems with her vision and a loss of balance caused her to fall over.

And it wasn’t just her physical health that was affected. While taking Venlafaxine, Sylv says she lost the “zeal” to do things she loved. An avid cook before lockdown, Sylv says she didn’t cook a meal from scratch for almost a year.

In February, her friend suggested she give medical cannabis a try.

“I didn’t really believe it to start off with, but I looked into it and decided to go for it,” she says.

Sylv chose The Medical Cannabis Clinics for her prescription and was accepted onto the Project Twenty21 scheme that offers to subsidise costs for eligible patients.

Her first prescription came through the door in March.

“It was like being six-years-old on Christmas Day,” she says.

Sylv was prescribed with two strains: 30gm of CMC, a balanced CBD-THC sativa and 30mg of MVA, a THC-dominant indica.

The two types of cannabis together helped “immensely” with her anxiety and also relieved the chronic back pain that she had been suffering from for a number of years. She felt the benefits immediately.

“Literally from the first puff, I could tell that the quality was good and it was doing what it was supposed to. It’s like your mum coming up and putting a blanket around you, that feeling of being comforted,” she says.

With the help of medical cannabis, Sylv is now coming off venlafaxine, but with that, has come extreme withdrawal symptoms.

First, she started to experience “brain zaps”, also known as paraesthesia.

“It affects the nerve endings in your head,” Sylv explains.

“You suddenly feel something like an electric shock going through your head.”

Her nausea also reached a new peak, to the extent where she had to stop driving.

“I drove to my corner shop, which is a two-minute drive away. On the way back, I was trying to stop myself from vomiting in the car,” Sylv says.

Thankfully, Sylv is close to coming off venlafaxine completely, replacing the anti-depressant with her new prescription.

“Medical cannabis, for me, has been life-changing,” she says.

“My dad says I sound so much brighter. I feel joy. It enables me to laugh and feel relaxed and I find that I enjoy things more now.”

Sylv and her friend have now started a help group on Telegram, an instant messaging platform that allows users to create an anonymous account.

The pair are helping others gain access to a medical cannabis prescription, providing peer-to-peer support and explaining the process to people who might otherwise be unaware.

Medical cannabis has improved my wellbeing, my motivation, my self-confidence. It has made me want to share what I have with others and help people because I feel very privilege,” says Sylv.

“We’re trying to reach people who are self-medicating, who maybe need a hand and give people the information they need so that they can check for themselves and see if they qualify for it.

“We’re trying to give back a little bit and inform people that there is such a thing as medical cannabis.”

Sadly, as a result of her struggles with anxiety over the last year, Sylv was made medically redundant from her job in early April and her husband was made redundant less than a week later.

Now facing a difficult financial situation, Sylv is uncertain about what the future holds for her prescription, which costs her £300 per month.

Even with the help of Project Twenty21, her medication, which makes her “feel like a human being again”, is at risk.

“If I have to stop [my prescription] because I can’t afford it, it will feel like a leap backwards; from almost being back to my normal self to somebody that might not even be able to go out of the house,” Sylv adds.

“It’s going to feel like a limb has been cut off; it’s like a lifeline.”

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