top of page

MOGAD
Myelin Oligodendrocyte Glycoprotein Antibody Disease 

Please watch the video below and share it wherever you can to highlight this extremely rare and vastly unknown about disease that I have been battling

Transcript Of Video

Hi everyone, I just wanted to give you a brief update regarding me, my work and my future. I tend to keep my personal and professional life & socials separate, but I have gone through something that will affect both my work and personal life. 

 

Last February i suddenly couldn’t walk and was taken into A&E. After lots of tests i was diagnosed with an extremely rare autoimmune disease called Myelin Oligodendrocyte Glycoprotein Antibody Disease (MOGAD) which affects my central nervous system. It’s a newly discovered disease and along similar lines to Multiple Sclerosis, but different. Basically my immune system which is supposed to be protecting me is attacking me. There are many varying symptoms from memory loss, confusion, paralysis, fatigue, blindness, balance, bladder and bowel issues…the list goes on, and a lot of them are affecting me. 

 

After being diagnosed early last year I was on a steady curve up, slowly getting back to my old self. I had a relapse last year and it wasn’t half as bad as the first one. So I thought, “that’s ok, I can cope with this”. However, 2 weeks ago I had a severe relapse which ended up with me being admitted into hospital again (which is where I am writing this from), and will be a steeper climb back to full health. 

 

There is no cure but it is not life limiting. I’m am on a fun cocktail of heavy duty drugs which will hopefully lessen the relapses, but everything is trial and error as there is a lot about MOGAD that is still unknown. My amazing Neurology team at the Queens Medical Centre in Nottingham are working hand-in-hand with the MOGAD and NMOSD specialists at The Walton Centre in Liverpool and looking after me. 

 

​

​Having recently moved from London back to Nottingham and being able to set up a bigger studio to make jewellery, I’m deeply upset I can’t put it to full use yet. 

 

But I will!

 

I’ll drop the occasional post as I have lots of footage I can use, and although full commissions are closed temporarily, I’ll make pieces as and when I can. And of course I’ll still be scouring for new and vintage tools so tag me in any you think I’ll like!

 

I wouldn’t normally post something this personal about myself, but because it is so rare and no-one has heard of it, even medics at the hospital, GP’s, pharmacists, friends or family. The purpose of this post is to raise awareness of MOGAD.  Even if you just read this, share it, comment, like, follow etc (you know how the algorithms work) please do so far and wide so it reaches as many people as possible. 

 

There are many diseases that people aren’t aware of, and if you are going through something similar yourself, please feel free to comment below or send me a message and I will reply. 

 

Thank you for reading this and I really do appreciate all your love and support for Bottlebee, and for me personally.

 

Seena x

Myelin Oligodendrocyte Glycoprotein Antibody Disease (MOGAD)

To find out more about Myelin Oligodendrocyte Glycoprotein Antibody Disease (MOGAD)  visit MyMyelitis a website with more information, set up by Scott Tarpey who also has  MOGAD

bottom of page