Sharon Harris, UK. June Scleroderma Awareness Month 2017. Raynaud's, Autoimmune Rare Disease. Patient Profiles DAY 24

 

Sharon Harris, UK

Patient Profiles DAY 24

June Scleroderma Awareness Month 2017

Raynaud's, Autoimmune Rare Disease

Sharon Harris, UK

Name:           Sharon Harris  

Location:       Chorley, England, UK  

Diagnosis:   

   

Scleroderma, Raynaud’s, Arthralgia, Calcinosis, Telangiectasia, Epilepsy  

Year of diagnosis:    Raynaud’s, 2012 

Scleroderma, August 2016

Where / who diagnosed you?  

Dr Samaranyake, Consultant Rheumatologist, Preston

What were your presenting symptoms?  

I had ulcers on my little finger, so my GP gave me chilblain cream.

I returned some weeks later, still with the ulcers as well as joint stiffness and tiredness all of the time.

I knew something was not right. The GP then referred to me the specialist, Dr Sam.   

Dr Sam told me that I had systemic scleroderma and how did I feel about this. I did not really know what it was, and cracked and broke down.

I rang my mum and told her that this was serious.  

I was devastated for a good 2 weeks. I cried every day and still do, as I feel I have a very bleak future ahead of me.  

Current reality   

Since being diagnosed, it has affected me emotionally, psychologically, and made me short tempered. I am also experiencing the menopause, so I am constantly hot and cold.  

I will not let it beat me or stop me going out to do things, but I have to spend days in bed after doing anything.  

My mum bought me a dinner service for Christmas, which I have dropped half of, already! 

I can not take antidepressants due to my epilepsy medication.  

I have lost 4 stones in weight since last August, as I am unable to eat most things and bring food back up. This is gradually improving with diet changes.  

My side hurts all of the time with scleroderma pain, as well as my chest bone and my bones. 

I moisturise my skin daily, but have tight skin on my legs and arms.  

My legs and arms feel heavy, as though I am walking with a person on me all of the time. 

I wish I could do more, but I have hardly any energy. It takes me much longer to do things eg. Cleaning and simple tasks. 

I have ulcers and calcinosis which are extremely painful.

 

Please describe your current symptom involvement and management, including any treatments taking and taken.  

I am currently taking medication for epilepsy, nothing for the scleroderma. I am due to see the scleroderma specialist again in August.  

I take Losartan for my Raynaud’s. I have been offered Iloprost but am hesitant due to the side effects.  

I take thyroxine for my underactive thyroid and digoxin for my heart.  

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

 

My hands are so swollen that I can not grip anything or make a fist. My finger tips are very sensitive and painful with ulcers and calcinosis.

I also have carpel tunnel syndrome which the Occupational Therapist has given me straps for.  

My right foot is swollen, so I have to wear flat boots and fluffy socks. I am no longer able to ‘dress up’ anymore.  

I feel restricted and have to wear gloves all of the time. I can not write or sign my signature anymore. I use a sponge adaptation on pens, to help me hold the pen, as I can not grip it. 

I also have adaptations in the kitchen for tins and bottles.  

I have a raised toilet seat, as well as hand rails and a walking stick to help me move about. 

I find everything tiring and an effort to do anything, so I will put most things off. 

I am limited to a weekly shop with my mum. If I make the effort for special occasions, I will suffer for days afterwards.    

I feel as though I am moaning all of the time and so I stay away from socialising as I do not want to get into conversations, as I am in too much pain.  

The constant neuro-muscular pain makes it difficult for me to sleep, adding to my continual tiredness.  

I also worry about the impact that this disease is having on my mum and son, as I do not want to cause upset to my family.  

What are your 3 top tips for living with your diagnosis?  

Make the necessary adaptations   

Go one day at a time  

Rest if you have to  

What are your 3 wishes for the future? 

A cure will be found SOON

I wish all fellow patients well. I have found great support in the social media groups and have been encouraged by other patients’ stories.

I have a sparkling future ahead, with my lovely little dog, Mackey, and my family 

  

Huge thanks go to Sharon for sharing her scleroderma reality and experience in such detail, for scleroderma awareness month. Sharon’s initial symptoms sound very similar to my initial experience.   

To view the NHS England, Digital Ulcer Management Guidelines, Click here

To read more about why I chose ‘Patient Profiling and Research’ as the focus of my 2017 campaign, Click here    

Why Research and Patient Profiles? Scleroderma Awareness Month 2017, Raynaud's, Rare Autoimmune Disease, Click here   

2017 INDEX Scleroderma Awareness Campaign Patient Profiles, Click here    

INDEX to Scleroderma Awareness 2016 Campaign, Click here     

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   

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 29^th June 2016, Click here

World Scleroderma Day 29^th 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  

2017 Rare Disease Day unmet clinical needs to the scleroderma patient

  

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

INDEX

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 19^th 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. 

1^st 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:

Raynauds Scleroderma Awareness Global Patients

Twitter: @SclerodermaRF  @RaynaudsRf  

Google Plus:  RaynaudsSclerodermaAwarenessGlobalPatients  

#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

Jan Petrie Procter, UK. June Scleroderma Awareness Month 2017. Raynaud's, Autoimmune Rare Disease. Patient Profiles DAY 22

Jan Petrie Procter, UK

Patient Profiles DAY 22

June Scleroderma Awareness Month 2017  

Raynaud's, Autoimmune Rare Disease

Jan Petrie Procter, UK

Name:           Jan Petrie Procter 

Location:       Shrewsbury, Shropshire 

Diagnosis:     Diffuse Systemic Sclerosis, Raynaud's 

Year of diagnosis:    July 2014

Age at diagnosis:     44 

Where / who diagnosed you?

Royal Shrewsbury Hospital

What were your presenting symptoms?

 

Digital ulcers 

I was diagnosed with CardioMyopathy (Heart Failure) in 2012. Until that time I was extremely healthy and had had no major illnesses. 

The cause of the heart failure is still unknown although my doctors have suggested the most likely cause is having contracted a virus at some point.  

Managing my heart failure took a couple of years but eventually we got the condition pretty much under the best control possible and life continued, albeit I had to stop work for a while due to my health.   

Approximately one year on, in 2013, my fingers were very painful, with increasingly severe ulceration. 

Tips of a couple of fingers were black, others had digital pitting. 

A number of visits and pleas for help to the GP and also the practice nurses came to nothing.  

In desperation, I was doing my own research into the problems I was dealing with regarding my fingers, such as extreme pain when I had hardly knocked them.   

I was then rushed into hospital in an unrelated incident, and happened to have a doctor see my fingers, I was immediately admitted to hospital, where I stayed for five weeks – yes five long weeks in the middle of the summer – not knowing what was wrong – why I was there – with very sick people – and feeling sicker than ever, myself!

Current reality:  

From there on, I have been diagnosed with Scleroderma and Raynaud’s. 

I went into hospital to receive a course of Iloprost Infusion – which entailed a one week stay, with limited success. The cold weather is a nightmare for my fingers, and I am often seen wearing plasters on several, if not all, of my fingers.   

Nothing works for this, and I have tried everything including heated gloves, hand warmers etc. If my fingers are cold, they are cold, even if the rest of me is warm. 

I have been approved to receive Illoprost treatments whenever my fingers are bad, or in the autumn as a preventative measure. 

I have problems receiving sufficient Illoprost though, as it makes my blood pressure drop so low (55/45 at one point). 

 

 

 

I have telangiectasia – red marks on my face, chest and a couple on my shoulders. Currently I have a tan which really helps to cover them and although I intensely dislike them, there are worse things to have.  

I have exceedingly dry eyes – waking up in the morning my eyes are unable to open until I have used eye drops to lubricate them. I also use a gel at night before I sleep, but this has limited effectiveness.  

My skin is very dry – its kept manageable by using products like Aveeno. I moisturise my face at least three times a day.   

My hair is so thin now, again, something I intensely dislike, but just put up with.   

Many dental problems – my gums are receding, I’ve had five teeth out in the past two years.

I have to rest during the day – a little nap after work is absolutely essential if I am to do anything in the evening (ie cook dinner or participate in family life).   

I have regular appointments with my rheumatologist and cardiologist, just for check ups. We have planned an Illoprost infusion for November.    

Work have been absolutely fantastic. I have a heater right next to me, and my poor boss must despair at the temperature sometimes – most people who walk in to the office comment on the temperature.

I work on a RAF base in the military transport maintenance section. The support which I have received within my team, is probably the main reason I have been able to continue working, flexibly around my symptoms.   

My current biggest challenges include:   

Managing to do normal things with such painful fingers eg. typing, opening jars, washing hair etc  

I hate the way I look when my skin is particularly tight, dry, sore and flaky   

Tiredness

My wishes for the future:   

Yes, sometimes I feel desperately frightened for the future. Googling symptoms, life expectancy, outcomes, etc has previously sent me into a pit of depression, but in general, I think I tend to manage my symptoms, probably not as well as I should, as I think do have a tendency now, to bury my head in the sand to some degree.   

But my philosophy is – there are far worse things happening to far better people than me. I have been lucky- it could be so much worse.

I am so, so, fortunate to have a wonderful support network of family and friends (despite the fact that I pretty much never mention my illness and just hope that they understand when I have to pull out of events etc).

So, it’s ever onwards to the next adventure – who knows what’s around the next corner – for me, it’s a diving trip to Egypt in four weeks – I will not give up.  

Love to you, especially Nicola who is a constant source of inspiration. I can’t wait to read your stories too.        

Huge thanks go to Jan for sharing her scleroderma reality and experience for scleroderma awareness month.   

To read more about why I chose ‘Patient Profiling and Research’ as the focus of my 2017 campaign, Click here    

Why Research and Patient Profiles? Scleroderma Awareness Month 2017, Raynaud's, Rare Autoimmune Disease, Click here   

2017 INDEX Scleroderma Awareness Campaign Patient Profiles, Click here    

INDEX to Scleroderma Awareness 2016 Campaign, Click here     

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   

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 29^th June 2016, Click here

World Scleroderma Day 29^th 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  

2017 Rare Disease Day unmet clinical needs to the scleroderma patient

  

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

INDEX

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 19^th 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. 

1^st 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:

Raynauds Scleroderma Awareness Global Patients

Twitter: @SclerodermaRF  @RaynaudsRf  

Google Plus:  RaynaudsSclerodermaAwarenessGlobalPatients  

#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