How people with Scleroderma are doing a job?

[dacharya]

I would like to know how people with scleroderma are able to earn money for living? Doing a job is not easy but I would like to know how such patients are able to make their living?

[Jmrose]

I manage a dental office and it is usually very cold in the office. I sit on a heating pad at my desk and have a plug in hand warmer, along with a sweater . it's easier in the beginning of the week, but by the end of the week I'm ready for the weekend and to get out of the cold. Good Luck.

[kimmo]

I was diagnosed in 1996 with scleroderma and managed to run a business up until 2010 with very few issues. In 2010 I collapsed and was rushed to hospital where I remained for 4 weeks, losing my colon and large intestine to this insidious condition. My life literally changed overnight and I have not been able to work since then. I did try to resume after my recovery but it was just too much.

My advice to anyone is to live each day to the full for as long as you can as tomorrow is promised to no-one 🥰

[KatieAnna in reply to kimmo]

I was diagnosed in 2002 with Ssc and worked as an NHS clinician until I retired in 2015. I still volunteer in a school and café for the homeless. I just have to make sure I'm in a warm office or wear loads of layers and gloves and scarf indoors. I feel really lucky to be well enough to still do stuff. I feel very sorry that so many sufferers are so massively impacted.

[dacharya in reply to kimmo]

I am very sorry to hear all this. But how are you able to make your living without money? Are you getting any aid?

[kimmo in reply to dacharya]

I’m unsure where you reside, I am in the UK. Any savings I had were exhausted and once that happened I was able to claim disability benefit. I am now claiming my pension and my partner is employed so my life is quite comfortable. Many fellow sufferers are not so lucky.

[dacharya in reply to kimmo]

I am from India. What benefit do you get from disability benefit? Does the Govt. pay you anything?

[kimmo in reply to dacharya]

In our country people are able to apply to the Department of Work and Pensions if they suffer from certain medical conditions which prevent them from working. There are very vigorous assessments with back up evidence required from medical practitioners and consultants, plus face to face assessments, before decisions are given as to any awards being made. Many claims are refused. The system has been abused over many years and now it is much more difficult for genuine claimants to get the help they need. When you work you pay National Insurance from your income and this contributes to your state pension. I am now able to draw my state pension as I have reached the age when it is due and have contributed sufficient years NI to claim it. Any disability benefits paid before pension age, as at this moment in time, continue too. It is an amount that I can survive on, but many others are struggling.

[dacharya in reply to kimmo]

But what about the young people with such disabilities? They won't be able to earn and pay for the pension scheme. The UK government should consider them because UK is a very rich country.

[kimmo in reply to dacharya]

There are also other benefits which all people with disabilities can apply for if they cannot work and this scheme will contribute the necessary national insurance contributions to the state pension scheme for them so they can claim at the appropriate age. That is how it works at the present time but our benefits system is under in depth investigations at the moment so everything could change.

[dacharya in reply to kimmo]

Thanks for explaining everything. I am a writer and I don't work. My book was published in the US and UK. Is there a way I can let people in the UK know about it? I have no other income source and I can only do this work from home.

[kimmo in reply to dacharya]

I don’t think you need to let people in the UK know about this, they are already aware! Genuine claimants are struggling at the moment to reach a successful outcome as our benefits system is in crisis. Many people have made claims over the years which have not been genuine and the government have now realised it can no longer maintain the system as it is and a major overhaul of our benefits system is underway. It is meant to help those with disabilities which prevent them from accessing work but there is a greater emphasis now on encouraging those who can work with their disability back to work in some capacity and reducing their benefits wherever possible or completely, as I understand it. The predictions for our welfare bill in the future, we are told, is such that the UK cannot continue to pay disability benefits at the rate it is has, so that is the reason for the government taking action now. Many people will be affected, a lot of genuine people are extremely worried and those who are vulnerable and need support are also very concerned. A lot of the voluntary groups who assist these people have made it known publicly their concerns too but I personally don’t think it will change anything. It is not a good time at present to be a vulnerable person with a disability who is unable to work in the UK who needs to make a claim, or indeed has a claim which is due for review.

[ApusApus]

Only diagnosed a year, have been working outside as a forest school leader for past 10 years. Have changed job to being a teaching assistant with forest school element so less outdoors but still 2 days a week but with a supportive boss.

[dacharya in reply to ApusApus]

Good to hear that. Thanks!