Thursday, 23 June 2016

DAY 23: Kidney / Renal, Scleroderma Awareness Month 2016, Raynaud's, Autoimmune Rare Disease

DAY 23: Kidney / Renal  

Scleroderma Awareness Month 2016  
Raynaud's, Autoimmune Rare Disease

DAY 23  Scleroderma Awareness Month: 
KIDNEY / RENAL Management

As discussed in DAY 3  Scleroderma Awareness Month 2016 – Scleroderma can affect all body parts. 

I also focussed on the Kidney and Renal involvement for DAY 15  Scleroderma Awareness Month 2016 post, where I focussed on the symptoms of kidney involvement and kidney crisis. 

Today’s image focusses on the risk factors and treatments used to attempt to control the symptoms when the kidney is affected in scleroderma.

Kidney involvement used to be the main contributor to death in scleroderma patients. 

However, due to improved understanding and treatments being made available this is now no longer the case, with lung involvement now the main contributor to life threatening complications. DAY 17 Scleroderma Awareness Month 2016.

As can been seen in the image, there is no cure as such, for kidney involvement, as the treatments target symptom suppression. If the relevant kidney bio-markers are prevalent, some patients may benefit from taking ACEi  (Angiotensin Converting Enzyme inhibitor) drugs to try and prevent further organ damage. 

This class of drugs have improved the outlook of the scleroderma patient with kidney involvement significantly.

In the event that a patient has experienced irreversible kidney damage, a transplant may be a final option, as by the indicated guidelines. 

To see the UK Scleroderma Study Group Guidelines, Click here 

Over the last few decades, clinical trials have focussed on better understanding of the mechanisms and processes involved in the scleroderma affected kidney, thereby, improving life expectancy and quality of life for this type of patient. 

The Zibotentan Better Renal Scleroderma Outcome Study (ZEBRA) is currently recruiting scleroderma patients with kidney involvement. To learn more about this, Click here  




An edited version of this article was published here, in my Column with Scleroderma News. 
June 2016. 

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      

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       


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  

More unmet clinical needs  

Rare Disease Day 2016



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

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. Thank You. 
#HOPE 


 

Last Update: April 2018





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