Saturday, 14 April 2018

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

‘Your skin cancer has cleared’ 
Scleroderma, Raynaud's, Autoimmune Rare Disease. 



#SclerodermaFreeWorld  #RaynaudsFreeWorld  


 

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.   






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! 

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

2020 UPDATE on the amazing fundraising achievements by the Milan family. 

Eternal gratitude to them, in memory of the very much missed Chris.   






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

Living the dream, Scleroderma Style. 

#SclerodermaFreeWorld #RaynaudsFreeWorld  





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





  

Scleroderma Family Day 2020

25th Anniversary Meeting

The Atrium, Royal Free Hospital, London, NW3 2QG

Chair: Professor Chris Denton

PROVISIONAL PROGRAMME


09.30 – 10.00           Registration and Coffee

10.00 – 10.20           Welcome                                                   Dame Carol Black
                                                                Prof Chris Denton & David Abraham

10.20 – 10.40           What is a Biopsy?                                    Dr Kristina Clark

10.40 – 11.05           Dental aspects of Scleroderma            Prof Stephen Porter

11.05 – 11.25           Gastrointestinal problems –                       Dr Fiza Ahmed
shedding new light on old problems 

11.25 – 11.50           Pulmonary hypertension and the heart Dr Gerry Coghlan

11.50 – 12.15           Scleroderma cohort studies –                  Dr Francesco 
                                 ‘Learning from our patients’                     del Galdo

12.15 – 14.15           LUNCH BREAK – see below  

14.15 – 14.45           25 years of progress –                          Prof Chris Denton
from ‘black box’ to ‘positive trials’

14.45 – 15.15           International speaker –                            Dr Madelon Vonk
                                 Scleroderma Management in Netherlands

15.30                        Raffle


Lunchtime Discussions Groups / Demonstrations include:

Clinical Trials                                                                  Rachel Ochiel and team
National Institute of Health Research                            Christine Menzies
Drug Information / monitoring                                        Pharmacy
Massage                                                                         Keith Hunt MBE
Pulmonary Hypertension Education / nursing            Sally Reddecliffe/Adele Dawson
Rheumatology Laboratory                                          Research Laboratory Staff
Scleroderma Education / Nursing                          Louise Parker/ Joseph Cainap
Thermography                                                                Dr Kevin Howell
SRUK                                                                             Ollie Scott
Sjogren’s syndrome                                                       British Sjogren’s Society 


To Read My Articles:  

Gift in My Will, Click here 

Planning for the Future, Click here  

 


Rare Disease Day:   

Rare Disease Day 2020:  

  

Listen to my interview with John Smeeton, (Silver Fox), from the Royal Free Radio, here  


 

Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt  here   


 
Rare Disease Day 2020: NIHR 'Research gives hope to Rare Disease patients', Click here  

  


 
Rare Disease Day 2019: Leaving a Legacy Gift, Click here       



Rare Disease Day 2019: 11am 97.4RockFM headlines, NO CURE, Click here  

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

2017 Rare Disease Day Medical Research  


2016 Rare Disease Day Patient Voice   

2016 Rare Disease UK Parliamentary Reception       

  

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.


To read about medical research at the scleroderma unit, Click here   

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 overall. 

For optimum patient care, 3 hallmarks preside:







supported by a medicaldream team’ 
(expert specialist as the clinical lead).

INVESTMENT in MEDICAL RESEARCH is CRUCIAL.   


To read my articles:  

Celebrating 20 years of being a patient at the Scleroderma Unit, Click here

2019 New Challenges, Click here
 
NIHR Video: 'My Experience of Clinical Trials', Click here 

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

The Importance of Medical Research and Awareness to the Scleroderma, Raynaud's, Autoimmune Rare Disease patient, Click here  

2018 Scleroderma Awareness Raising and Medical Research, Click here    


SCLERODERMA:

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- How to Diagnose, Click here        

'All you need to know', 2016 Awareness Video, Click here    

Global Patient Profiles 2018 Video, Click here    


Unmet Medical Needs, Click here     




Calcinosis Video, Click here    


The scleroderma tooth fairy, Click here     


Skin Cancer and scleroderma, Click here   

 

Sept 2017

Prof Chris Denton and I, Sept 2017

June 2019



This year, 2020, I am celebrating 22 years of being a patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre.  

Read more, here.    

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. Along with the Raynaud's world trail blazer, Dr Kevin Howell.  

I am truly humbled and inspired by their work ethic and commitment to their patients.  

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 original diagnosing doctor, that I was looking at a 15month prognosis. 
 


  

Chat Magazine May 2019

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. Read more, here    


  

World Scleroderma Day 2018, Click here  

World Scleroderma Day 2017, 29th June, Click here    

World Scleroderma Day 2016, 29th June. Origins of the date, Click here   

World Scleroderma Day 2015, 29th June.  


James Carver, myself, Prof Chris Denton

I had the pleasure of being a presenter and part of the European co-hort who gave a presentation at the European Parliament, Brussels, in honour of World Scleroderma Day 2015.  

I am immensely grateful to James Carver, former MEP, for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.  

To view the presentation, Click here 

Raynaud's

October:  
Raynaud's, Click here  
 
To view the UK treatment guidelines for Raynaud’s Phenomenon, Click here   

To view the EULAR treatment guidelines, Click here   

To view Thermograph Video, Click here    

To view Thermograph image, Click here    

   
My Raynaud’s reality, Click here     


The global Raynaud's trailblazer - Dr Howell and I, Sept 2017

To view Nailfold Capillaroscopy equipment (used to identify possible blood vessel damage), Click here   

Invisible Disability Awareness Video, Click here

To read My ‘Invisible Disability’ experience, Click here   

50 Shades of Blue, Click here



 

For latest updates follow / subscribe:  

@SclerodermaRF 

@RaynaudsRf 

Twitter, Instagram, Blogger, YouTube, Facebook Page:

#SclerodermaFreeWorld           #RaynaudsFreeWorld    #Research  



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


Alternatively, to make a direct donation to fund medical research via the Royal Free Charity, Scleroderma Unit, Click here    
 


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

  

  
Last Update: Feb 2020.       


‘Your skin cancer has cleared’ 
Scleroderma, Raynaud's, Autoimmune Rare Disease. 



#SclerodermaFreeWorld  #RaynaudsFreeWorld  









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