21 Year Old with Rare Disease Fights through life!

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Hi guys! I’m Shezz Simpson, 21 years old and battling a really rare, life threatening illness. My illness is called Granulomatosis with Polyangitis.

According to Medscape “Granulomatosis with polyangiitis (GPA), formerly known as Wegener granulomatosis, is a rare multisystem autoimmune disease of unknown etiology. Its hallmark features include necrotizing granulomatous inflammation and pauci-immune vasculitis in small- and medium-sized blood vessels”

Signs and symptoms

GPA has a spectrum of clinical presentations that includes recurrent respiratory infection in adults and upper and lower respiratory tract problems in children. In addition, patients may report the following chronic, nonspecific constitutional complaints:

  • Fevers, night sweats
  • Fatigue, lethargy
  • Loss of appetite
  • Weight loss

Ophthalmic manifestations

  • Conjunctivitis
  • Episcleritis
  • Uveitis
  • Optic nerve vasculitis
  • Retinal artery occlusion
  • Nasolacrimal duct occlusion
  • Proptosis

This disease stops the blood flow to my vital organs which cause organ damage/failure. This incurable illness that I’ve been battling has put me through 3 left lung tumours, subglottic stenosis (closed over airways) which has resulted in 4 airway surgeries this year and having an emergency awake tracheostomy inserted in my neck(which I still have in months later), a paralysed face which means I really struggle to eat properly and I can’t drink without a straw), a 14cm blood clot in my upper arm sitting above my heart, loss of cartilage in my nose, left side hearing loss, partial left eye vision loss, subcutaneous emphysema, insomnia, joint pain daily, chemotherapy and all the nasty side effects from the high dose steroids, medications and immunosuppressive drugs that I have to take daily to keep me alive.

I’ve just recently started posting about my journey on my Instagram and would love to help anybody struggling with similar situations. There is a light at the end of the tunnel and it’s so important to stay positive. Being 21, these are meant to be my years for celebration, going out with friends, socializing regularly, etc. Instead I’m house bound, waiting for my next airway surgery and getting constant treatment and chemotherapy, I’ve thought of so many things I can do at home to keep me busy but posting about my journey and helping others seem to interest me the most as I’m able to connect with others who may be struggling due to chronic illness/mental health/other issues.

Please don’t hesitate to reach out via Instagram message and if you don’t have Instagram, message me on Facebook if you ever need someone to talk too! There is a light at the end of the tunnel, unfortunately there can be just a few speed bumps on the way! & just a reminder to be kind always as you never know what people might be going through.  You can follow her journey on her Instagram page which is ~ shezz_simpson

Note: This story is published by the approval of Shezz Simpson, FibromyalgiaResources.com now hold all the copyright to this article.

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