Stefanie’s Story

Stefanie’s Story

My story is the same as probably everyone’s diagnosed with Idiopathic Subglottic Stenosis. I was an energetic, active person, into sports and never had any problems breathing wise. Until 2001. Very gradually I had notice myself becoming increasingly breathless whilst working out, even walking up steps. During my worst phases I couldn’t even make the bed without sitting down and resting afterwards. And as with so many others, the initial diagnosis was asthma. Thankfully I had ENT specialists detect the stenosis quite quickly. Little did I know that this would kick start an endless odyssey of hospital trips, dilation procedures, a cartilage augmentation and crico-tracheal resection, let alone for it to take 10 years to find out exactly what it was that I was suffering from. I felt very alone and misunderstood during this time as no one can really comprehend what it is you are going through. As difficult as it was the one thing that kept me sane during this time was running. Once I knew it was ISS I was able to connect with and meet women going through exactly what I was experiencing. The support and understanding I found has helped me come to terms with this disease a bit better. I have just undergone a laryngo-tracheal-reconstruction in London (done by Guri Sandhu, one of the leading specialists in this field) – the third major procedure in this seemingly never-ending spiral that ISS brings with it. Hopefully third time lucky. Will I ever be cured? Probably not. This disease is so unknown still that I doubt I will, in my lifetime, be fortunate enough to see it happening. But after surgery number 3 I feel more positive than I have in years. I feel I can go back to my normal life, where being active is nothing but natural. And done with much less effort than during these years of struggle. And perhaps even without constant hospital trips.

Read more in Stefanie’s blog >>>

Date: September 27th, 2013 | Categories: Patient's Experiences | By: | Comments: 3

3 Responses to Stefanie’s Story

    Mrs Gwendolyn Kirby

    Hi Stephanie I thought I would get in touch as Mr Sandhu has just completed the LTR for me. After 10 years with a Trachi I am now Trachi free. I am in Charing Cross Hospital and just thought I’d have a look at your site.

    Kind regards
    Gwendolyn Kirby (Wendy)

      Sandra Bratton

      Dear Qwendolyn Kirby, i thought i would send you a quick message as i am also being treated by Mr Guri Sandhu at charing Cross hospital. Mr Sandhu has kept me alive for the last 10yrs. Iam totally tracheostomy dependent. And have been for the last 5yrs, before i was having either major reconstruction or laser treatments regularly to keep me safe. Unfortunately all treatment ive received as been unsuccessful, it was really heart warming to hear you now tracheostomy free. It still gives me hope Mr Sandhu has promised he wouldn’t stop looking for a cure for me. Many thanks again.

    Hi Stephanie I go under on Thursday to see if guri can fix my subplot if stenosis fingers legs and eyes crossed he can I’m very nervous tho xx love and hugs xx

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