Raynauds Scleroderma Global Patients: 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.

www.justgiving.com/fundraising/sclerodermaunit-royalfree

#SclerodermaFreeWorld #RaynaudsFreeWorld

blog.raynaudsscleroderma.co.uk

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

25^th 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

2017 Rare Disease Day unmet clinical needs to the scleroderma patient

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:

Early diagnosis

Expert specialist centers

Access to innovative medicines

supported by a medical ‘dream 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.

1^st 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