MDS - Social Issues

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MDS - Social Issues

Post by Frank » 17 Nov 2008 12:55

Be interested to hear from others on the social aspects of their illness.
Have you found your family and friends are uncomfortable and want to avoid the obvious issues? Do they even understand what the illness is? Should there be a really simplistic overview somewhere that you can point people towards to explain the illness and its impacts for family and friends?

Self-employed .... what to do next?

Employed ... how does your employer view your illness? Have you had to stop working? Impacts on you and yours financially?

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Re: MDS - Social Issues

Post by andmcn » 08 Jan 2009 15:57

Frank, In answer to your questions. My family and friends have been very good for the most part. There was some initial discomfort where my sons were concerned but this has gone with time. There have been some friends who don't quite know what to say and others who are confused because I look (and feel) so well. My wife has been able to talk to me about her concerns and this has allowed me to tell her how I'm feeling and what my thoughts are. There have been some emotional moments which I think have been good for all of us.
My employers have been magnificent. They've arranged for me to work from home if I want by providing me with a Blackberry and a laptop, hospital appointments are classed as special leave with pay so all in all they have been very supportive. They, as with some friends, are confused by how well I look and by the fact I've had little time off work since being diagnosed with MDS. I've been very lucky and to date there hasn't been a financial impact for me personally. I've met others who haven't had such supportive employers and for them even taking a day off to see a doctor or because they are feeling unwell does cause them financial difficulties.

My biggest bugbear about having MDS is the difficulty in getting travel insurance. Whether it is for a long weekend away in the UK, a short break in Europe or somewhere further away the cost is horrendous and the lack of knowledge about MDS by insurers is appalling. Even when they quote without covering MDS the cost bears no relation to the risk. I'm sure others are having similar problems. In the grand scheme of things not being able to get travel insurance probably doesn't rate very high but it doesn't half annoy me.

Re: MDS - Social Issues

Post by MDSAdmin » 11 Jan 2009 13:00

In regards travel insurance, please follow this link
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Re: MDS - Social Issues

Post by murrayfs » 23 Feb 2009 18:54

Hiya, I found that my friends and family didn't really know what MDS was (as is usual) but particularly when my blood counts were low, I looked so pale, that people could see I was unwell. Post my drug trial on Revlimid my blood counts shot back up again so I look really well again to most people. Workwise wasn't too much of an issue, because my employer always gave me time off for hospital appointments - even when I had to go monthly down to London (I live in the west midlands - so this would be a whole day out of my working week). I now only work 4 days a week, so have every friday off, so now schedule all hospital visits to my local hospital in Walsall for a Friday, so it really doesn't encroach on my working life too much at the moment. I went down to four days a week initially because of my deterioration in health. - Fiona Murray West Midlands
Fiona - Female, age 52, diagnosed in 1999 with MDS 5q-. Currently taking Revlimid (Lenolidamide)
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Re: MDS - Social Issues

Post by Angela » 22 Apr 2009 22:35

I was diagnosed in 1997 at the age of 20. I was informed that I was one of the youngest patients to be diagnosed. My work were fantastic, they reduced my hours straight away, gave me hospital appointments off as special leave on full pay. I was off sick on full pay from April 2008 until September 2008 during my treatment of Antithymocyte Globulin (ALG/ATG), when I returned to work part time then gradually built my hours back up to full time. I have since changed jobs, now on my third job since then and each job I have had to explain my situation. I have been very lucky in the fact that each company I have worked for have been very large companies and been able to support me with their Occupational Health Departments. My bosses have been very understanding and supportive too. My friends and family were all very shocked at first as we didnt understand anything to do with MDS and thought it was the end of the road, but 12 years on we are now used to it, we do get complacent as I am often very well, but, it does come back to bite me if I do too much! I am still responding to the ALG I had, Kings College Hospital are not sure how long this will go on for, it did look as if it wasn't working during my pregnancy in 2004 but after lots of blood and platelet transfussions for a few months after my son was born, my counts came back to what they were before I fell pregnant and are still hanging on in there. Fingers crossed for lots more years of responding to ALG.
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Re: MDS - Social Issues

Post by whiskers » 24 Apr 2009 10:32

Hi Frank
I do not know you but saw you message of 17th November. I am a new member joined about a month ago. I find the forum layout quite awkward to navigate as there seems to be messages all over the place.

Anyway, I noticed that you said way back in November that you were finding relations and friends were finding it difficult and uncomfortable to understand what is wrong with you andtend avoid the issue.

Well I found the booklet from the Leukemia Research series Myelodysplastic Syndromes (MDS) very useful for showing people family, friends, etc; all about the condition, including employer and collegues at work. it is fairly clear and consise and well worth using. The second but much more detailed, although written by a late sufferer rather than a medical specialist, purpoosely to get the sufferes point of view; can be found on the Myelodysplasia-A Patients View by Ian Birch. Very good reading from a layman.

As far as employment is concerned, my company supported me for 12 months, when I was having longer and longer periods off of work sick. I was diagnosed with MDS in February 2008, after a non-real recovery from surgery on my prostate gland. After having every test, every type of internal endoscopy, scans MIR, CT, X-rays, etc; all anyone could find was that I was very anaemic, eventually I was referred to a Haematology Consultant at my local hospital who after a special blood test and a bone marrow biopsy diagnosed MDS. They referred me to KIng's College Hospital, Pro. Mufti's team who are brilliant.

As far as work went, I kept going off sick, largely with chronic fatigue, so I tried with their consent to cut down my hours, this did not work, so I cut out the odd day, still did not work, so I then tried working from home, thius was better for a short while, but thenexhaustion set in again and I found that I could not even do more than an hour without two hours complete rest. Work had become impossible. I then had a period of five months off on full pay, returned to work and after a month I was totally exhausted agin and went off sick. this time it was for six months, but by then I was on Statutory Sick Pay and both my employer and I realised we could not carry on like this. I then had tto transfer benefits after six months onto what is now called strangely 'Job Seekers Allowance', even though my job is still being held open for me to this day! The allowance, however, is part of a wider cover called Employment and Support Allowance, which I have been on ever since (although I did have to have a medical to prove I was too ill to work). It is not a lot of money to live on though, I am 64 now and just get £108 per week to live on because my wife gets a small pension;; so belt tightening is the name of the game.

After recently and suddenly becoming transfusion reliant, I have been put on a new treatment requiring self injecting with two types of drugs and then having to have weekly blood tests to make sure the treatment does not upset the white blood cells and platelets, whilst giving growth hormaones to my bone marrow to produce more red cells. It is not a cure but a chance to stabalise the condition, but generally it has worsened over the past three months of which periods of time have been spent in hospital, rather ill to say the least, paerticularly one episode of a severe chest infection which nearly finished me. But I am still here and trying to be positive. You can see my original message in the forum as 'Myelodysplastic Syndrome- My Story So far-Any Comments or Views' named from Whiskers.

I would be interested to know how things are going with you, please do get in tough, the more the merrier!

Best wishes Whiskers (John).
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Re: MDS - Social Issues

Post by nannyness » 27 Sep 2009 14:41

Hi all, I am a newbie, was diagnosed Sept/Oct 07, have dealth with this pretty much on my own, I have left the booklet and a few other pieces of printed information for relatives and friends to read, but still dont think anyone really understands and to be honest I havent really taken it as seriously as maybe I should have. I also have FM fibromyalgia, which because that causes me more pain and suffering has become my priority ailment, but really the MDS is far more serious and have neglected myself in the fact that I have continued to drink and smoke for the past 2 years. Think I have just been given a wake up call, these last few months I have felt worse than have ever been, suffering with depression, aches and pains all over my body, the tiredness, fatigue, feeling nausea, stomach pain and really just want to curl up and sleep the days away. I am due to go to Haematology for appt 6th October after not needing a transfusion on my last 2 visits, but am worried after this last test as to why my own doc wants to see me. He has never asked to see me before.Regarding MDS and social life, I am becoming a hermit, I do not have a social life anymore, have been out of work sinced March 08, finally work let me go on health grounds in Nov 08, and have been fighting for ESA ever since, failed a tribunal in July so am now on JSA and they are expecting me to apply for full time work, it is so wrong, I can hardly stand or walk in the mornings let alone get to a place of work and do a days work without my concentration going, or any other ailment attacking me. I have very few real friends and very few genuine family that care now, because most of the time I LOOK WELL, they all think I am putting it on for sympathy I am sure, I live alone, have trouble keeping relationships, again because I think I am for ever moaning about one thing or another, or am suffering with one thing or another. My whole life this past 9 months has been hell, I am told to think positive, get out and about, do this, do that, yes well easier said than done, they should spend a day or two in my shoes first. Sorry if I have rambled and moaning considering I have only just found this site, but am so angry, fed up and alone and hope some of you know where I am coming from. Hugs to everyone suffering today! Vanessa xxx
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Re: MDS - Social Issues

Post by sophie » 06 Oct 2009 17:33

Hi Vanessa,I don't usually get involved with messages on this online forum, as this is purely a patient to patient exchange, but reading your message, I think the Macmillan Benefits Helpline could assist with some of your financial problems. Their number is 0808 801 0304.
Some hospitals also have specialist onco-hematology counsellors, who specialise with MDS or cancer issues - this can help with how you currently feel.
Please get in touch with me for help with contacts.
In any case - well done for leaving a message - and being so open about how you feel - I can imagine it is not easy.
Let us know how the appt went on the 6th Oct.
I also hope a few more people on the site will reply shortly for a bit of moral support.
Do contact me or speak to one of your specialist nurses for assistance on how you feel.

Patient Liaison
020 7733 7558
Sophie - Patient Liaison
For any queries:
Call 0207 733 7558

Please do not send me PM messages on this forum - I do not check it often.
This forum is purely for patient to patient communications. Thanks for your help.
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Re: MDS - Social Issues

Post by julie » 10 Oct 2009 11:34

Hi Venessa I'm so sorry to hear your going through this on your own.It's so hard to take in all the information and such an unheard of illness.

I was first told I had MDS RA back in June 2007 and was simply handed a leaflet which told the satatistics of life expectancy- and to my horror said 2 to 5 years [which of course just isn't true] but unfortunatly was all I had to go on.

I was put on a watch and wait policy and each time I went back to see my consultant we asked, could this be a mistake , his response was to go and enjoy life while I can ,as we would soon be best of friends. It was so scary.

Then my family went to the MDS forum in September 2008 and they spoke about all sorts of amazing things that could be done for patients, they also meet up with other patients with MDS who were all very positive about their life expectancy.
They also spoke about patients having the right to see a specialist at a centre of excellence , which I would think for you would also be Kings College.

My daughter [bless her] found all about how to do this and although my own GP and consultant were reluctant at first I did eventually go to Kings in June this year , where I saw the wonderful Prof Mufti I had a second bone marrow biopsy and to cut a long story short -although I have still been told I have MDS -it is so low on the IPSS score I could live for many ,many years without treatment.

I'm very lucky I know , my biggest annoyance is for the past two years -both myself and my family believed It was all so hopeless and the stress it caused was considerable.
[I wish I could have been told this wonderful news back in June 2007.]

I know those feelings of despair and can only hope you can get in touch with Sophie ,who I'm sure will be able to help put you in contact with someone who is going through the same as you.
much love Julie
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