Sunday, 28 February 2021

Rare Disease Day 2021

 After a year of misery and confinement we can finally see the light at the end of the tunnel. Do we go towards it? We will, but with trepidation. 

I have had my first vaccination, so has my husband and carer and our eldest daughter who works for the NHS. We are now feeling a little more safe, although we know that we could still get sick. 

If you have a rare disease or condition, then you are even more at risk from the pandemic currently swarming our world. As someone who has a poor auto-immune system I don't know how my body would react to the Covid virus. It was a small anti-body that set my immune system into overdrive and caused all my problems in the first place. It has a name, the anti glycine receptor anti body. Because of that one little anomaly my body decided to attack itself and now I'm left in constant pain and wheelchair bound when outside my home. 

My daughter has a less rare condition, Elhers Danlos Syndrome. But she doesn't have the classic version and we are not really 100% sure what she has. She has been diagnosed with a Marfanoid Body Shape, but so far no other indications that come with Marfan Syndrome. Although they will be keeping an eye on her as there can be complications as she gets older. She also has a rare form of psoriasis, which is not responding to treatment. She has slight scoliosis but not bad enough for surgery. She also has Autism, which I believe actually helps her to deal with all her other issues. I can imagine that life would be very different if she was a typical teenager. 

So as people rush towards the freedom being offered, whether they take the vaccination or not is up to them. No one can force someone to put things into their body that they don't want. Some of us don't have a choice. And we need to stay away, and keep safe for longer because our risks are so much higher. We should all be thoughtful of others as well as ourselves. 

Today, Feb 28th 2021, is Rare Disease Day.

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