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.
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.
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.
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 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.
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.
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.
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
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:
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 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
2018 Scleroderma Awareness Raising and Medical Research, Click here
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 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.
#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.
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.
provides the brightest light,
for the illumination of
the rare disease patients’ plight.
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:
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
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:
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
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.
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
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
The global Raynaud's trailblazer - Dr Howell and I, Sept 2017 |
For latest updates follow / subscribe:
@SclerodermaRF
@RaynaudsRf
@SclerodermaRF
@RaynaudsRf
Twitter, Instagram, Blogger, YouTube, Facebook Page:
#SclerodermaFreeWorld #RaynaudsFreeWorld #Research
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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