Friday, 16 March 2018

Jen Wells, USA. AUTOIMMUNE DISEASE AWARENESS MONTH 2018. Scleroderma, Raynaud’s, Autoimmune Rare Disease

Jen Wells, USA 
AUTOIMMUNE DISEASE AWARENESS MONTH 2018 

Scleroderma, Raynaud's, Autoimmune Rare Disease. 



#SclerodermaFreeWorld  #RaynaudsFreeWorld 





Name and Location: 
Jen Wells, USA 


Presenting symptoms:

I had most symptoms for two years or more at time of diagnosis.   
These were my symptoms: 

Secondary Raynaud’s  
Calcinosis (hardening lumps in fingertips)   
Pain, numbness, tingling and loss of feeling in finger-tips, hands, arms, legs, feet and toes. 
Fibromyalgia 
Costochondritis, balance issues, neuropathy, severe nausea & vomiting (gastroparesis), dizziness, extreme fatigue, lack of energy, brain fog, sleep issues (too little), muscle, body and joint pain, constant colds (always sick), stiffness and swollen fingers and toes, Vitamin D deficiency, hypothyroidism, rashes, hives, constant itching, Sjogren’s. 
Extreme sun sensitivity/photosensitivity.  


What are your 3 biggest current challenges due to your diagnosis?

Pain management  
Energy levels/fatigue   
Finances

I am allergic to most narcotic pain medications which include vicodin and percocet. I am also extremely sensitive to medication containing serotonin and the medications used to treat used fibro and neuropathy such as those in the gabapentin and neurontin family. 

I have recently developed a sensitivity to steroids (oral & injectable) so pain management is incredibly difficult.

In fact, I have been told by several pain management specialists that they would just be taking my money and there is nothing they can do. 

One doctor even refunded me my co-pay after looking at my chart. 

So, I am now in search of something outside the box other than biting my cheeks and clenching my fingers and toes constantly.

Fatigue is another big issue for me that seems to partner frustratingly well with pain.

Now that I am on a Medicare Advantage PPO and can no longer afford my major medical medication, my day to day functioning has once again become a huge issue. 

Humira was life changing and now I find myself once again, in bed constantly. 

A quick trip to the store or a simple outing will often take me a couple days to recover. You don’t always realize how much a medication helps, until you are forced to stop taking it.

Keeping up with daily chores and doctor appointments has once again become extremely difficult. Things I once took for granted can often take all day, including a shower. 

I mean come on, should you really need a 2 hour nap after a shower? I think not. And getting dressed should not be an all day event, I’m talking sweats here, not getting glammed up.

I absolutely despise the fact that my kids constantly see me exhausted or in bed. Yet if I push myself too hard I may be in bed for up to a week. 

I am trying to become better at balancing things but each day brings its own set of challenges. Often frustrating beyond belief. 

All I can do is hope that things will change and I will somehow be able to get Humira or another biologic, sooner than later.

Which brings me to my third issue, expenses. As a single mom with two teenage boys on disability, money is tight. 

I have extremely supportive and generous parents but they are getting up there in age and are exhausting their resources in order to help me with food and rent. 

It breaks my heart but I can honestly say that without them, I would not have a roof over my head.

My disability is just enough to cover doctor appointments and the most basic medication expenses, forget food or housing. 

I receive just enough to disqualify me from receiving any type of state assistance including Medicade, Access or medication assistance. 

When I think about this and the future it truly frightens me but for now I am grateful to have shared custody with my children, while I still can.
 

What are your 3 wishes for the future?

Continue to share Scleroderma education and awareness with others

Never stop talking about this horrible disease 

My dream is that, we will one day, live in a sclero free world 
#SclerodermaFreeWorld 

To read more about Jen’s Scleroderma, Raynaud’s, Autoimmune Rare Disease reality, Click here      




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

INDEX to patients      







  

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, make a donation here  
 


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

  

  
Last Update: Feb 2020.       

Jen Wells, USA 
AUTOIMMUNE DISEASE AWARENESS MONTH 2018 

Scleroderma, Raynaud's, Autoimmune Rare Disease. 



#SclerodermaFreeWorld  #RaynaudsFreeWorld 






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