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14 replies to this topic

#1
DeiterSchlesinger

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Hello,
THE FOLLOWING IS A EXTRACT OF AN EMAIL I SEND FOR A FRINED IN UK
I write on behalf of a friend who is interested in finding out more about medical cannabis CBD Oil in the UK.
 
My friend ill call Alice ( Alias )  is shy and hesitant to publicly make contact with organisations such as your self, as there are many websites that simply have ill intentions. I glanced over your site and on the surface you seem to have a genuine interest in helping people get good info.
 
So Alice has Ehlwrs Danlos Syndrome:
 
"The Ehlers-Danlos syndromes are a group of connective tissue disorders that can be inherited and are varied both in how affect the body and in their genetic causes. They are generally characterized by joint hypermobility (joints that stretch further than normal), skin hyperextensibility (skin that can be stretched further than normal), and tissue fragility.

The Ehlers-Danlos syndromes (EDS) are currently classified into thirteen subtypes. Each EDS subtype has a set of clinical criteria that help guide diagnosis; a patient’s physical signs and symptoms will be matched up to the major and minor criteria to identify the subtype that is the most complete fit. There is substantial symptom overlap between the EDS subtypes and the other connective tissue disorders including hypermobility spectrum disorders, as well as a lot of variability, so a definitive diagnosis for all the EDS subtypes when the gene mutation is known—all but hypermobile EDS (hEDS)—also calls for confirmation by testing to identify the responsible variant for the gene affected in each subtype.

For those who meet the minimal clinical requirements for an EDS subtype—but who have no access to molecular confirmation; or whose genetic testing shows one (or more) gene variants of uncertain significance in the genes identified for one of the EDS subtypes; or in whom no causative variants are identified in any of the EDS-subtype-specific genes—a “provisional clinical diagnosis” of an EDS subtype can be made. These patients should be followed clinically, but alternative diagnoses and expanded molecular testing should be considered. 

Please remember that an individual’s experience with an EDS is their own, and may not necessarily be the same as another person’s experience. Diagnostic criteria are meant solely to distinguish an EDS from other connective tissue disorders, and there are many more possible symptoms for each EDS than there are criteria.

What are the symptoms of Ehlers-Danlos syndromes?

Clinical manifestations of an Ehlers-Danlos syndrome are most often joint and skin related and may include:

Joints

Joint hypermobility; loose/unstable joints which are prone to frequent dislocations and/or subluxations; joint pain; hyperextensible joints (they move beyond the joint’s normal range); early onset of osteoarthritis.

Skin

Soft velvety-like skin; variable skin hyper-extensibility; fragile skin that tears or bruises easily (bruising may be severe); severe scarring; slow and poor wound healing; development of molluscoid pseudo tumors (fleshy lesions associated with scars over pressure areas).

Miscellaneous/Less Common

Chronic, early onset, debilitating musculoskeletal pain (usually associated with the Hypermobility Type); arterial/intestinal/uterine fragility or rupture (usually associated with the Vascular Type); scoliosis at birth and scleral fragility (associated with the Kyphoscoliosis Type); poor muscle tone (associated with the Arthrochalasia Type); mitral valve prolapse; and gum disease.

Each type of Ehlers-Danlos syndrome is defined as a distinct problem in connective tissue. Connective tissue is what the body uses to provide strength and elasticity; normal connective tissue holds strong proteins that allow tissue to be stretched but not beyond its limit, and then safely return that tissue to normal. Connective tissue is found throughout the body, and Ehlers-Danlos syndromes are structural problems. An analogy: If one builds a house with faulty materials, say half the necessary wood or with soft aluminium nails, it is certain there will be problems. Some problems are more likely to show up than others, but because those materials were used everywhere and are not necessarily visible, one can be surprised by where a problem shows up or how serious it is. more..

Her main conditions are widespread pain which is managed by potent painkillers which over the long term Alice feels have robbed her of many aspects of her life. 
 
My ultimate question is as follows;
Firstly can you provide Alice any information in terms of Dr's in the UK that might evaluate or case to be prescribed or evaluated on suitability for the use of medical cannabis products?
 
Moreover a link to the UK Governments current LAWS and how Dr's are or not permitted and what conditions classify for a patient to warrant treatment
 
Lastly, if you can advise strains for Chronic pain as Alice's condition is a rare genetic disorder and have you got any info or submitted cases on Ehlwrs Danlos Syndrome
Any feedback that might help Alice regain some quality of life would be appreciated. Please be as objective and specific as possiblThn

Thanks


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"The evidence, as well as the key to understanding, lies within your own experience – and nowhere else."

 

Kindest Regards

 

Deiter

 

:yinyang: 

 

 


Say thanks with some bits:  bc1q2u6zm8fvmf9n6zv0kdtq0gsvhjfhdcysfss94j  (BTC Only)

#2
bakedcake

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Is this a question for us? Or is this your email to someone? Just as we may be part of the commonwealth I don’t think many people would know where you should be contacting may be better to hit the UK420 boards
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#3
DeiterSchlesinger

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Thanks. Yes it was an email. Just a stab in the dark

https://www.change.org/p/uk-parliament-access-to-medicinal-marijuana-for-ehlers-danlos-syndrome-hypermobility-spectrum-disorder?recruiter=899753747&utm_source=share_petition&utm_medium=copylink&utm_campaign=psf_combo_share_initial.pacific_abi_gmail_send.variation.pacific_abi_select_all_contacts.fake_control.pacific_email_copy_en_gb_3.control.pacific_email_copy_en_us_4.control.pacific_email_copy_en_gb_4.v4.pacific_email_copy_en_us_3.control.lightning_share_by_medium.share_by_medium.lightning_2primary_share_options.variant

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#4
FoxRed

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Thank for this email) really intersting info


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#5
merl1n

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The UK 'does' have a medical access program BUT with some fairly stringent criteria.

Here in Oz, if your GP agrees and will make a referral then access can be obtained. In the UK, EVERY other possible medication must be shown to have been trialled before approval can be considered.

There are also conditions on the ailment cannabis is being sort for 

 

From https://www.ehlers-danlos.org/

"….However, the doctor must be a specialist consultant, and the conditions for which these medicines might be used at present are multiple sclerosis; epilepsy; and nausea and vomiting caused by chemotherapy. Even then it must be that all other treatments have been tried first, and the risks and benefits considered carefully....

...Currently there are no licensed cannabis-based medicines for chronic pain in the UK...."

 

The smoking of cannabis products is also NOT allowed by UK law. So oils, edibles and topicals are the only 'legal' options available. THC is still considered to have no 'known' medical benefit and is scheduled as such.

And then there are the costs involved. The NHS will not provide cannabis products and some people have quoted as much as £1500 ($3000 AU) per month seeing private Drs to obtain private scripts.

There have been some petitions via sites such as 'Change.org' over the years for EDS to be included, but these have not been strongly supported. There has also been a campaign by an organisation called 'End Our Pain'.

Here's a link to their site https://endourpain.org and a flyer "A Patient’s Guide to Accessing Medical Cannabis in the UK" https://endourpain.org/wp-content/uploads/sites/18/2018/07/Patient-Guide-End-Our-Pain-website.pdf

 

Hope it helps

Merl1n


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There's only one way I get my 'greens'

and it ain't by eating them
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survivors too..god bless em
More compassion in this world is what we need!

#6
HeatherVaug

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Man i can not tell you anything about this syndrome to be honest so i do not know if anything marijuana related could help Alice, you see, in UK there is  such a thing as a medical programme but i do not know how strict is it and which is their attitude to certain diseases. But for sure, i know that a lot of similar diseases can be dealt with marijuana products, as for a prophylactic.


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#7
HeatherVaug

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Man i can not tell you anything about this syndrome to be honest so i do not know if anything marijuana related could help Alice, you see, in UK there is  such a thing as a medical programme but i do not know how strict is it and which is their attitude to certain diseases. But for sure, i know that a lot of similar diseases can be dealt with marijuana products, as for a prophylactic.

 What can i tell you for sure that she could actually try and go for a medical marijuana dispensary in USA for sure. My sister is also having a pretty rare condition so we decided to place her in such a place, and you know, she is really feeling better after it, she goes there for one week in like 6 months.


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#8
merl1n

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Ahh, Heather, there are some pretty heavy regulations in regard to the importation of medications. There is a EU agreement known as the Schengen Agreement regarding access to such medications, but this only pertains to members of the EU. With the EU/UK relationship being very fluid at the moment I'm not sure where this agreement sits presently, but I'm fairly sure it does not include importation from the USA.

 

Here in Australia, 'unapproved' importation is a crime with some severe penalties. We have had numerous U.S. companies trying to solicit business via this site and they are all told 'Piss off' as they can put us all at risk. They maybe nice, they maybe friendly but the law is NOT nice and NOT friendly. We all have to abide by the laws of the land in which we live, which ever 'land' that maybe.

 

Merl1n


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#9
HeatherVaug

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Man i can not tell you anything about this syndrome to be honest so i do not know if anything marijuana related could help Alice, you see, in UK there is  such a thing as a medical programme but i do not know how strict is it and which is their attitude to certain diseases. But for sure, i know that a lot of similar diseases can be dealt with marijuana products, as for a prophylactic.What can i tell you for sure that she could actually try and go for a medical marijuana dispensary in USA for sure. My sister is also having a pretty rare condition so we decided to place her in such a place, and you know, she is really feeling better after it, she goes there for one week in like 6 months.

yeah i know, but still we should give it a try


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#10
MarshallE

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Dude, i cannot tell you anything about the Ehlers–Danlos syndromes, i mean, i do not know if weed can be helpful in this case. I know that it is a kind of a genetic connective tissue disorders, and that is all. I know for sure that weed is helpful in the case you suffer from Nausea and PTSD, as i suffer from both of them. I am getting a medical mj treatment, and my condition is way better.


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