Saturday, 14 April 2018

‘Your Skin Cancer Has Cleared’, Scleroderma, Raynaud's, Rare Autoimmune Disease, Nicola Whitehill


‘Your skin cancer has cleared’  

For me, 2018 started with a further scleroderma related, potentially life threatening, additional health challenge. 

The Bowen’s skin patch re-presented, on my left knee.  
 
Last summer, I recognised the symptoms, and knowing that the medication Effudix cream had cleared the Bowen’s patch previously, I went to see my GP, Dr Tim Irvine, for a prescription for the cream, in August.  


Aug 2017 outside my GP practice - Cumberland Surgery


Due to the type of medication, in that Effudix is a chemotherapy cream, Dr Irvine was unable to prescribe it to me, and had to refer me to the local dermatology centre. 

Previously, I would attend dermatology appointments at the Southport and Ormskirk hospital.  

However, I was now required to attend a local clinic, with another dermatology team. 

At the initial referral appointment in January, Dr Bassas, the Doctor, was most concerned to rule out a potential melanoma, advising me that this could kill me. 

I refused to undergo a skin biopsy due to the time of year, as winter is my nemesis season.  

I agreed to a biopsy at the following appointment, in the event that the skin patch had not cleared with Effudix. I was grateful for Dr Bassas’ expertise and confirmed that I had consented to not having a skin biopsy, against his professional judgment.  

I detailed more about the January appointment, in my article ‘The Pandora’s Box of Scleroderma’.  

I then commenced daily application of the Effudix cream until a week before my follow up appointment, last week. Prior to attending this appointment, as the date came nearer, I was becoming increasingly more anxious. 

The Effudix cream had caused my skin to inflame and break, bringing pain, and causing discomfort.   

However, these symptoms subsided after a few weeks. On the day of my follow up appointment, the skin still remained discoloured, but was now smooth. 

I was however, anxious, as I knew that I was seeing a different doctor. I was not sure if I was going to have to succumb to the surgical knife, further to his medical expert view.  

It had also been playing on my mind that my 20 years experience of living with this diagnostic reality, had maybe, made me complacent with being told ‘this could kill you’.  

After all, in 1997, I was given a 15 month prognosis at the time of my initial diagnosis. And then in December 2016, I remain in a state of elation, having been told by Prof Chris Denton that ‘my skin is cured from scleroderma’.  

The feelings which I had in preparation of the follow up appointment were more than abated, by the end of the consultation, thankfully. 

Dr Anthony Downs examined the discoloured skin area on my knee and told me ‘Your skin cancer has cleared’. I was stunned and overjoyed, and what’s more – no biopsy

I then showed Dr Downs other skin ‘spots’ for him to confirm that these were sun spots, as well as, Actinic Keratosis, on my forehead.  

 




Dr Downs reminded me that the medications used to treat scleroderma, carry a potential increased risk of developing skin cancer combined with sun damage.  

I very much enjoyed the dermatology scleroderma related discussion which I had with Dr Downs. He totally blew me away with his medical knowledge. 

I hope that I provoked a similar reaction to Dr Downs, when I told him that I was now 14 years immunosuppressant free, other than bosentan for my Raynaud’s. He did look impressed / astounded!  

 
   
Being a long term survivor of the rare autoimmune disease scleroderma and Raynaud’s, in my experience, it is a most welcome, albeit, fairly uncommon occurrence to receive any positive medical progress, review.  




However, I remain in a state of elation that my body is now free from the ‘additional extra’, Bowen’s disease, and that my ‘skin cancer has now cleared’.  

I know that I am a ‘lucky’ scleroderma patient. Lucky, in that, I have minimal internal organ damage. Lucky, in that, I continue to survive. 

Sept 2017


Albeit, my full time job is looking after, and respecting my symptoms. 

As well as, reminding myself that ‘my job today is to simply get better’.  

Medical Research provides immense hope for #SclerodermaFreeWorld, in the meantime. I am delighted to be a Patient Research Ambassador.   



Rare Disease Day 2017 Vlog

This month, March, is Autoimmune Disease Awareness Month. I have been reposting the global patient profiles with a focus on medical research areas current unmet needs




My personal unmet needs.   




It has now been a year since the passing of Chris Milan, please hold his family in your prayers.   




In memory of his Dad, and to raise vital funds, Ben Milan is holding a charity boxing night on 15th March 2018.  


RIP Chris Milan 10/6/59 - 4/3/17

All monies will be shared and donated to the Scleroderma Unit and Children with Cancer.  

To take part in the online auction

DONATE to Ben's Just Giving Page.    

 

Wishing Ben the best of luck for a fantastic event, which Prof Chris Denton will be attending. So, not just the boxing, to look forward to seeing!  
Living the dream, Scleroderma Style.  

Please DONATE to the Scleroderma Unit.  

ALL of your money will be used for medical research purposes only. Thank You.  

#SclerodermaFreeWorld #RaynaudsFreeWorld  





An edited version of this article was published here, in my Column with Scleroderma News. March 2018. 

£3183.92 has been raised so far - Very Well Done, Ben, and, Thank You. DONATE


To read my articles: 


Rare Disease Day 2018, Research - Taking Part in Clinical Trials, Click here   

March Autoimmune Disease Awareness Month 2018, Click here   

Global patient video, Click here   

Becoming a Patient Research Ambassador for the NIHR, Click here  

If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here   


Scleroderma Awareness Month 2017 Patient Profiles Campaign, Click here     
 
Scleroderma Awareness Month 2017 Patient Profiles Campaign Patient Index, Click here        
The Pandora’s Box of the rare autoimmune disease Scleroderma, Raynaud's and Cancer, Click here


Key Event Dates 2018, Click here     

Importance of an Early Diagnosis, Click here     

Taking Part in Clinical Research Trials, Click here    


The Importance of a Multi Disciplinary Medical ‘Dream Team’, Click here 

Expert Specialist Centres, Click here      

My Skin is Cured from Scleroderma, Click here      

UK Guidelines for Managing and Treating Scleroderma, Click here      

Fatigue, Click here      

Mobility, Click here    


Diet and nutrition, Click here     


Raynaud's, Click here    



World Scleroderma Day 29th June 2016, Click here

World Scleroderma Day 29th June 2017, Click here   


Why Global Collaboration is important to the Rare Disease Patient, Click here      



RARE DISEASE DAY:
The theme to this years Rare Disease Day is Research

Rare Disease Day 2018 – Research, Taking Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here     

2016 Rare Disease Day Patient Voice
2016 Rare Disease UK Parliamentary Reception   


2017 Rare Disease Day Flashback  
  





Rare Disease Day is a fantastic opportunity for the entire rare disease community to shine a spotlight on their reality, combining as one unified voice. Where, at least one commonality presides –  
Medical Research provides the brightest light
for the illumination of the rare disease patients’ plight. 

I highlighted other areas of medical research interest within Week 3 of my Patient Profiles Campaign for Scleroderma Awareness Month 2017. 

VIDEO



Although rare disease patients are few in number, eg. 2.5 million scleroderma patients worldwide, (the World Scleroderma Foundation), the commonalities and golden hallmark for each rare disease patient are the same: 

Early Diagnosis
Expert Specialist Centres
Access to Innovative Medicines

Where MEDICAL RESEARCH investment is VITAL.

Research is the key. Abstracts from 2016 World Congress, Click here


Scleroderma Awareness Month Campaign 2016, Click here

Links

View video, here   

Preamble - here



The Family Day at the Scleroderma Unit, The Royal Free Hospital is taking place on the 19th May 2018. Browse the program, here

This year, I am celebrating 20 years of being a patient at this world leading expert specialist research centre. 

Sept 2017


I am eternally grateful to the global scleroderma trail blazers Dame Prof Black and Prof Chris Denton, whose commitment and dedication to unlocking the scleroderma enigma, is nothing other than, superhuman.
I am truly humbled and inspired by their work ethic. I am wholly appreciative for Prof Denton’s continued medical expertise and support, especially during my barrister qualifying years, 1997 - 2004. 

1st March 2004, I qualified as a self employed practising barrister. Further to having been told in 1997, by my diagnosing doctor, that I was looking at a 15month prognosis. 

I very much hope to utilise my professional skills and qualifications along with my patient experience, to help achieve the #SclerodermaFreeWorld dream, hoping to improve understanding and best practice, in the meantime.
  
For latest updates follow: 

Facebook Page:

Twitter: @SclerodermaRF  @RaynaudsRf  


#SclerodermaFreeWorld           #RaynaudsFreeWorld
#ADAM #Scleroderma
#Raynauds
#RareDisease  

Living the dream, scleroderma style.  


Please DONATE to help fund medical research at The Scleroderma Unit,The Royal Free Hospital, London.  



100% of your monies will be used for medical research purposes only. No wages or admin costs. Thank You.
#HOPE 


 

Last Update: April 2018




No comments:

Post a Comment