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


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    



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





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