An Open Letter to Kat Von D…

“If you don’t know what it’s like to have people around you think you’re ridiculous, try being openly vegan.” – Kat Von D 

One of my earliest memories is being in hospital with a preventable disease. Whooping cough. I can remember quite clearly being in the children’s hospital at just 18 months of age, the bars on the hospital cot seemed so high. I remember my great uncle coming to pick us up and take me home at the end of my stay.

But it is as someone who contracted the mumps aged 21 as a result of an outbreak among the student population  – who were among the main customers at my place of work – that vaccination became an issue close to my heart. This outbreak was one of several at the time directly caused by a decrease in vaccination rates due to Andrew Wakefield’s unethical and outright faked research into the MMR which caused all sorts of scaremongering in the British press. Then prime minister Tony Blair and his wife Cherie refused to say whether they had their child vaccinated which I think had a huge influence on parents at the time, Cherie having connections to known anti-vaccinationists as well as other pseudoscience peddlers. Vaccine uptake among 2 year-olds declined to around 80% in 2003 and 2004. This compares to around 92% in 1995 before the adverse publicity. The World Health Organization (WHO) recommends immunity levels of around 95% to prevent outbreaks of disease.

I was born before there was a routine vaccination for mumps in the UK. The MMR was introduced too late for me and no catch up campaign ran at the time because we had been covered for measles and rubella and there should have been herd immunity for mumps thanks to the new vaccine for the younger ones and the older people being made immune by having been infected. It worked perfectly until Wakefield came along with his vested interests in separate vaccines. (There is now a catch up campaign however, if you were not vaccinated for either measles or mumps due to being born before 1990 see here)

My case of the mumps was severe. I ended up in hospital. I was so swollen I physically could not swallow. I physically could not move my jaw to even open my mouth to intake fluids and became severely dehydrated and was at risk of death. I had a temperature that was off the scale. It took many months to fully recover. Mumps, as you may know, can also cause swelling of the gonads (testicles or ovaries) leading to infertility in adult cases, it can cause permanent deafness, it can lead to pancreatitis, meningitis and rarely even death.

A few years later I watched a 12 month old, too young to be vaccinated, suffer needlessly through a case of rubella. I had never seen rubella, or ‘German measles’ as it’s often known, before. I bet you have never seen it either. It’s quite minor by comparison to regular measles- well unless a pregnant lady catches it at which point it can wreak havoc on her unborn baby.

So Kat, if you really think you have problems being “openly vegan”, whatever that means, perhaps you should try being disabled, openly trans, openly Muslim, Jewish or black. Perhaps you should try being at risk of death from an entirely preventable disease because of the stupidity of your own parent.

No Longer Supporting KVD Cosmetics

This was going to be a post about the 10th Anniversary palette, a palette which will be the last thing I will ever purchase from Kat Von D cosmetics and frankly if I lived in the USA I would return it.

There are so many more things I could say, I could go into why anti-vaccinationists are just plain wrong, I could go into the ableism of their ‘movement’ but all of these posts have already been written by other people so I shall just leave a few links at the bottom for anyone interested.

Kath x

Links:

  • https://www.voicesforvaccines.org
  • https://www.immunisationfoundation.org.au/light-for-riley/
  • https://patient.info/doctor/immunisation-schedule-uk
  • https://www.cdc.gov/vaccines/pregnancy/index.html
  • http://pediatrics.aappublications.org/content/109/1/124
  • https://www.skepticalraptor.com/skepticalraptorblog.php/vaccine-court-myths-nvicp-facts/

The 2017 Diagnostic Criteria

Media PackThe long-awaited 2017 criteria for EDS and the associated papers have been released! Phew!

The new nosology includes 13 types of EDS.
Many of these are new to the classification table, they are not newly described though as it has been 20 years since the last classification in 1997. (You can find the old 1997 Villefranche classification in my ‘Types of EDS’ post from a while back.)
This is very exciting for those people with diagnoses of these rarer types. They have finally been properly recognised as members of the EDS family!  Continue reading

Rare Disease Day 2017

Rare Disease Day 2017In case you missed the memo, today is Rare Disease Day 2017!

Added together, rare diseases are not rare. Around 1 in 10 people have a rare disease.
A disease is classified as rare when it affects fewer than 1 in 2000 people in Europe.

2017 is the 10th Rare Disease Day and has a theme of research. I’m going to talk a bit about the new EDS research and diagnostic criteria due to be released very shortly. Continue reading

Missing In Action You Say? Bendy Problems

Yes, you’re right I have been! Sorry I’ve been MIA for a month or so, I’ve been seemingly stumbling from one health issue to the next recently.

Bendy Problems

After I finally got over the virus I had which knocked me out for a week or more it was “bendy week”. Women and girls with EDS get much more hypermobile when the hormone progesterone is high in their bodies as it destabilises collagen. As a result of this and my fatigued muscles I dislocated my shoulder joints (including both the socket and the AC joint) of my left arm so much it seems to have caused some lasting damage. Rheumatology have ordered scans as they think there’s a tear. All of the muscles in the area are going into spasm what feels like constantly and this is causing me to have headaches.

My need to take extra pain relief has triggered my gastroparesis symptoms and so food is once again not on my list of things I’m even wanting let alone enjoying but I have to keep forcing something down in order to take pain relief.

Halloween

I can’t believe I missed covering Halloween on here but if anyone wants to have a nosy at some of the things I was able to do you can have a look at the photos over in my course Flickr album here.

I hope you all had a great time turning yourselves into witches, mummies and zombies and didn’t have too many “bendy problems” to get in the way!

Kath x

August Is Gastroparesis Awareness Month

Gastroparesis Green RibbonAs regular readers know I have Ehlers-Danlos syndrome. Ehlers-Danlos quite often seems to bring along quite a collection of it’s friends to play with those of us who have it. It’s really not a case of the more the merrier though!

For some of us, including myself, EDS affects the digestive system. It can cause a variety of problems there including delayed gastric emptying, otherwise known as gastroparesis. Continue reading