It is important to share your story and raise awareness — Scope | Disability forum
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It is important to share your story and raise awareness

Tammyjane33 Member Posts: 761 Pioneering
As many people may or not know I like to raise awareness of different health issues including invisible illnesses, mental health issues and rare diseases.
I want to inspire and encourage others to share their personal stories without the fear of being judged.
It takes a lot of courage to share personal information about yourself but fortunately I have been working on my confidence and self esteem and managed to share my story about the rare disease I suffer with and I shared it with my local newspaper and it is now online on most social media platforms.
I'd be very grateful and appreciate it if you could show some support and like, share and comment below and also tell me a little about you and any challenges you face and hope if I can i may be able to help.
I've been a online community champion on a volunteer basis for scope for over a year and the reason I love this so much is that I get to connect with some amazing, inspirational individuals and I hope this can continue. I hope you all enjoy reading my story below.
Thankyou again for all the love, kind words and support.


  • woodbine
    woodbine Member, Community Co-Production Group Posts: 7,732 Disability Gamechanger
    Apart from illnesses my main condition is that I have epilepsy, I tried recently to open up a debate about epilepsy on here but it didn't last long which surprised me or maybe it didn't?
    Be extra nice to new members.
  • Tammyjane33
    Tammyjane33 Member Posts: 761 Pioneering
    Hi @woodbine, thank you for your response.
    I'm so sorry to hear that you have epilepsy. Do you get support from people close to you? Is it controlled or does it effect what you do day to day. If you ever need to talk, feel free to message me. I have a friend that has epilepsy along with a few other health issues and they have been finding things difficult due to covid and the condition not being controlled at the moment so I have a slight understanding of what you may be going through. If you can tag me in the discussion /debate you did on here about epilepsy I can try to contribute or add something to help?it's totally up to you.
    Take care,
  • PhilipAnderson
    PhilipAnderson Member Posts: 20 Connected
    Hi Tammyjane33 you do a great service to others with disability by sharing your story. I was encouraged by Frances Leckie, who manages Independent Living, to share my story and insights

    I have been amazed by the reaction, which I have found humbling. Have a look at the Comments under my latest piece

    I hope you, and others in the SCOPE community, may find something that resonates, and is helpful and encouraging, in the articles and their responses
    Best wishes
  • Lisatho11987777
    Lisatho11987777 Member Posts: 5,787 Disability Gamechanger
    I have lupus it isn't as rare as it used to be but I think its because its a hit and a miss when trying to test for lupus 
  • Tammyjane33
    Tammyjane33 Member Posts: 761 Pioneering
    Hi @PhilipAnderson thank you for your response and sharing your experience too and it's great to hear that someone like yourself is sharing their story to help others, I will check out your link tomorrow, thanks again.

  • Tammyjane33
    Tammyjane33 Member Posts: 761 Pioneering
    Hi @lisathomas50 thank you for your comment, yes I understand what you are saying.
    When I first started to experience symptoms of my rare disease the doctors in hospital first thought it may be lupus but over a period of time ruled it out and I was then diagnosed with this rare disease that's believed to be genetic.
    If I remember rightly lumpus can be hard to detect  at first.
    How are you doing if you don't mind me asking, do you have alot of pain on a daily basis?
    Thanks again for your response.
  • Tammyjane33
    Tammyjane33 Member Posts: 761 Pioneering
    Hi @mikehughescq thank you for your response. That's great that you have shared your personal story to educate others, as @PhilipAnderson and others above have also done and I have also reached out to share my experience with others.
    It took me a while to develop the courage and confidence to speak openly about how this condition has had an impact on my life both physically, mentally and emotionally.
    Thankyou again, 
  • Lisatho11987777
    Lisatho11987777 Member Posts: 5,787 Disability Gamechanger
    @Tammyjane33 hi yes lupus is hard to diagnose in the end I went to St Thomas hospital London and had to stay in for 8 days to have lots of tests done professor  Hughes was running the Louise coote unit at the time  

    I have sle with several variations in easy words I have systemic lupus  the variations I have are anti antipholopaside syndrome  commonly known as Hughes syndrome  I have another variation thst causes the brittle bones I also have lung heart liver and kidney damage all mild at the moment but all the variations put together cause problems I also have an overactive thyroid and COPD

    The new problem I have is my temperature if I get to hot my body doesn't cool itself Down so I have to cool my body down by getting into a cold shower it doesn't happen all the time so it's not  so bad also I can get realy cold so have to warm myself up 

    I do get pain but I did pain management and it worked for me as I cant take pain killers only unless I realy have to and only small amount due to my liver I cope with my lupus as I have had it since I was 18 thats when the problems started but didn't get diagnosed until I was 26 

    Lupus mimics other conditions and can also cause other conditions I had had a heart attack mini strokes and a stroke I have a left sided weakness 

    My hair used to fall out and my teeth and my gums fell apart starting from the age of 18 I cant have false teeth as there are no gums and the specialist said I wouldn't cope with a reconstruction I have lived with it along time so I just cope with it 

    It's hard sometimes especially now because all my appointments  have been cancelled due to the corona virus 


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