SKOL

Hypermobile Ehlers-Danlos Syndrome (#HEDS) is a progressive illness, meaning it worsens over time.

This progression obviously causes increasing physical problems, like worsening #dislocations, #subluxations and #pain, as well as poorer and poorer #healing.

It also causes something I haven't seen many chronically, incurably ill people talk about - grief.

------------------------------------------

I awoke this morning with body-wide #pain and a familiar, overwhelming sense of grief.


For a while, I cried. Then, once my tears dried, I decided to empty my head and #write...


A feature for real readers, this one's LONG, containing information about the hardest experience of my life, which still causes #grief years down the line.


READ AT:
youdontlookdisabled.com/grief


#YouDontLookDisabled[.com]
#YouSeeUs[.org]
#WeSeeYou[offial.org]

6 days ago (edited) | [YT] | 1

SKOL

⚠️ NEW FEATURE: #Fraud ⚠️ Tory MP, Helen Whately, tells #ableist lie in attempt to manipulate the masses.

While the wealthiest people and companies benefit from loopholes allowing hundreds of billions of pounds to be stashed instead of paid in tax, the Tory Shadow Secretary of State for Work and Pensions resorts to blatant deception to turn the UK against disabled people receiving PIP.

youdontlookdisabled.com/fraud

Parts of this feature may be hard to stomach, but facts are facts, and facts do not need to be liked or agreed with in order to be facts.

#YouDontLookDisabled[.com]
#YouSeeUs[.org]
#WeSeeYou[official.org]
#AbleistBritain
#TheTelegraph

4 weeks ago (edited) | [YT] | 0

SKOL

...This time, I COULD get my electric wheelchair to the polling station accessible entrance.

It was blocked by the site's gate being stuck in the ground last time.

But, the County Council did NOT fix the issue - it was two of the people staffing the polling station.

Under the Equality Act 2010, it is illegal for UK polling stations to not be accessible.

One of the staff said she had been trying to get this Council to fix the issue for TEN YEARS - meaning the Council hadn't chosen to break the law for a decade.

Were it not for her, the site would still be illegally inaccessible.

The other person staffing the station said I could use postal voting.
😡

I replied that it is NOT up to disabled people to work around laws being broken.

We have the RIGHT to vote in person, and UK Councils MUST provide accessible polling stations.

Being disabled does NOT mean we have fewer rights or that the law does not apply.

This is just another example of how the Equality Act and laws stemming from it are not enforced - allowing them to be broken with no repercussions.

It's another example of how bad ableism is in #AbleistBritain.

If you see this and had issues accessing your local polling station, either share your story in comments, or email contact@youseeus.org or contact@youdontlookdisabled.com.

#YouSeeUs[.org]
#WeSeeYou[official.org]
#Discrimination
#IgnoranceIsNoExcuse

1 month ago | [YT] | 0

SKOL

While UK news media and politicians launch another campaign largely targeting and attacking disabled people receiving #PIP, remember this, and ask why they aren't giving it the same coverage. Quote:
'Every year an estimated £388 billion that should have been paid in tax disappears into tax havens.

Two thirds (£274 billion) of this is giant multinational corporations shifting their profits offshore to avoid tax. The rest is wealthy individuals evading tax. This is according to our friends at Tax Justice Network.'

A quarter of global tax dodging is enabled by the UK and British Overseas Territories - Tax Justice UK share.google/dcUXB6x4Wvrmax7vq

#AbleistBritain
#Ableism
#Discrimination
#InstitutionalAbuse
#YouSeeUs
#WeSeeYou
#YouDontLookDisabled

1 month ago (edited) | [YT] | 0

SKOL

Forgot I called the BBC in London. His 'Yeah' at the end...Is that the BBC admitting to bias in favour of Israel?

It certainly signifies he agreed with what I said.

Anything recorded after that was cut because it was not relevant to my questioning of BBC bias in favour of Israel.

Look at the definition of 'semitic'. You'll see it applies to Palestinians. They are semitic, therefore antisemitism applies to them and CANNOT be applied only to Israelis and Jews within Israel.

Arguably, Jewish people across the world who do not speak fluent Hebrew or use it as their primary language are not semitic - particularly those who are European or of European descent.

youtube.com/shorts/X_iJHZ4m_T...

1 month ago (edited) | [YT] | 0

SKOL

Make it make sense...

1 month ago | [YT] | 0

SKOL

For anyone with #EhlersDanlosSyndrome who peeps at my channel...
⚠️ THIS IS LONG BUT IMPORTANT.⚠️

The role of the TNXB gene and Tenascin X production in EDS - particularly what is currently the Hypermobile type - should not be ignored or underestimated, as it is by this video.

I wrote about this 20 or so years ago when I was EDSUK's editor, in charge of the information they were putting out in their magazine, Fragile Links, and when I persauded that charity to change their name to EDSUK - a waste of a good name.

In that piece, I argued the case for those with HEDS receiving heart scans to monitor for aortic dissection and aortic valve prolapse, saying those with the TNXB gene are also open to the same issues usually associated with VEDS.

It was a short piece, but Professor Grahame shook my hand and congratulated me for it at a UK EDS conference.

When I was controlling Fragile Links, I also included the TNXB gene in HEDS in a table detailing the genes underlying the types of EDS. Professor Grahame saw this and was happy for me to do that inclusion.

You don't get higher validation than Professor Grahame.

I wrote that piece after speaking to a mother who had been begging surgeons to net her son's intestines to help guard against internal rupture.

They refused, saying internal organ rupture NEVER happens in HEDS.

He lost his life to what the pathogist's report described as 'an intestinal explosion' at the age of 18.

Issues with the TNXB gene and Tenascin X are basically the same as symptoms of HEDS (joint hypermobility, subluxations, dislocations, fragile, delicate, stretchy skin, poor wound healing and issues with scarring, chronic pain, etc.).

More information on TNXB and Tenascin X issues is now available on PubMed, and it may be that HEDS ends up being reclassified completely once more is known.

TNXB and Tenascin X issues SHOULD be receiving more attention than they are.


Both the EDS Society and EDSUK are failing those with EDS, which is why I will not donate to either, after giving EDSUK its name and over £50,000 worth of work for free.

I think EVERY HEDS body should be tested for the TNXB gene based on my research that Professor Grahame congratulated me for.

The role of the TNXB gene and Tenascin X production in EDS - particularly what is currently the Hypermobile type should not be ignored or underestimated.

For those who don't know, PubMed is the most credible source of medical information and it's what the medical profession uses for research.

To argue your case for testing, or anything else medical, use PubMed.

Print off relevant abstracts from PubMed (you do NOT need the entire study, abstracts are enough) and put them under your doctors' nose.

They will know they are from PubMed by information on printouts, and they will knkw ignoring the information could lead to serious trouble for them should you lodge official complaints with relevant bodies, or seek legal action against them.

Here is a link to PubMed and information in the TNXB gene and Tenascin X.


pubmed.ncbi.nlm.nih.gov/?term=Tenascin+X+and+Ehler…

1 month ago (edited) | [YT] | 0

SKOL

My son suggested I try getting my photo on Getty Images and iStock. I applied yesterday and they said yes! 😃😯 I'm so surprised! They're the sort of shots I post on my personal Insta page (@skol1974).

1 month ago | [YT] | 0

SKOL

QUESTION 🤔: Old Father Time's decapitated head (prop for photos I want to make), separated from his body by #MotherNature in her #GrimReaper/Death role (the Grim Reaper would be female, not male, as death is part nature, BUT...

...Would Father Time have ears?

Because we can beg for more time, but Old Father Time doesn't hear our plea.

What do you think?

I MUST get back to rebuilding #YouSeeUs.org and posting new editorial on #YouDontLookDisabled.com soon...

#EhlersDanlosSyndrome
#HEDS

1 month ago | [YT] | 0

SKOL

Couldn't get any good shots due to falling light and this little one moving so much, but this is the #squirrel who tried getting into the window bird feeders. Such a little cutie!
#WildlifeGarden
#OrganicGarden
#ForestGardening

2 months ago | [YT] | 1