News and Notes 2014
Collectively RARE DISEASES are NOT RARE. There are between 6000 and 8000 recognised RARE DISEASES and 5 new Rare Diseases are described in medical literature each week so the number of RARE DISEASES is growing all the time. http://www.raredisease.org.uk/about-rare-diseases.htm
One in every 17 people in the UK will be affected by a RARE DISEASE at some point in their lives. This amounts to 3 and a half million people in the UK http://www.raredisease.org.uk/
Over 6000 rare diseases are characterised by a broad diversity of disorders and symptoms that vary not only from disease to disease but also from patient to patient suffering from the same disease. Misdiagnosis is a common problem with many rare diseases. In ITP diagnosis is one of elimination, that is to say that ITP is diagnosed once all other possible conditions/diseases are ruled out leaving ITP as the final option/diagnosis.
http://www.rarediseaseday.org/article/what-is-a-rare-disease
A disease or disorder is defined as a RARE DISEASE in Europe when it affects less than 1 in 2000 people. In the United States a disease or disorder is defined as RARE if it affects fewer than 200,000 people at any one time. ITP is thought to affect something like 4000 people in the UK at any one time.http://www.rarediseaseday.org/article/what-is-a-rare-disease
ITP Awareness Month - September 2013
ITP Support Association - Mission 2014
ITP Support Association - Mission 2014
Yesterday (24th February) - I received my copy of the ITP Support's March 2014 edition of their newsletter - The Platelet. Here, there's an update on the organisation's big fund raising mission for this year (page 9). They are aiming to raise £30000 to pay for costly, and long overdue, improvements to their HQ in Bedfordshire. I was pleased to hear of people's generosity so far, donating through their Buy-a_Brick campaign, yet sorry to hear that the campaign has suffered setbacks. Namely further deterioration of their already dilapidated, cramped building during this winter's storms, meaning that they're now looking at a new building, instead of upgrading an existing one. Something for which they have to obtain planning permission. Nearly all the funding for the Mission is coming from donations from individuals. Attempts by Dame Shirley Watson, the Chief Executive and Founder of ITP Support, to acquire additional funding from various organisations have so far been largely unsuccessful, ITP Support being "handicapped by ITP being a national group for a rare disorder". Local companies and charitable trusts in the main have been dismissive, deeming their cause not locally relevant to Bedfordshire. Amid so many competing, worthy good causes, national organisations and grant awarding bodies prioritise conditions / issues affecting the majority of the British population.
I hope things improve here as the year goes on, but it goes to show the problems small charities face in obtaining funds which, though modest to a large organisation, are either too a big slice of their budget or are unaffordable completely. This includes small charities for relatively rare conditions, such as ITP, which are off-the-radar to the majority of people, unless they or a close relative are directly affected.
Rare Diseases Day 2014 - 28th February
Here area some stats the ITP Support Association posted during February on Facebook:
The staggering figure of 60 million is the actual number of people estimated to be affected by RARE DISEASES just in Europe and North America. There are over 6000 RARE DISEASES, with new ones being added literally every week. ITP is of course just one of those RARE DISEASES.
Collectively RARE DISEASES are NOT RARE. There are between 6000 and 8000 recognised RARE DISEASES and 5 new Rare Diseases are described in medical literature each week so the number of RARE DISEASES is growing all the time. http://www.raredisease.org.uk/about-rare-diseases.htm
One in every 17 people in the UK will be affected by a RARE DISEASE at some point in their lives. This amounts to 3 and a half million people in the UK http://www.raredisease.org.uk/
Over 6000 rare diseases are characterised by a broad diversity of disorders and symptoms that vary not only from disease to disease but also from patient to patient suffering from the same disease. Misdiagnosis is a common problem with many rare diseases. In ITP diagnosis is one of elimination, that is to say that ITP is diagnosed once all other possible conditions/diseases are ruled out leaving ITP as the final option/diagnosis.
http://www.rarediseaseday.org/article/what-is-a-rare-disease
In the European Union (EU) one Rare Disease may affect just a handful of people whereas another may affect as many as 245,000 patients. In total in the EU 30 million people are affected by one Rare Disease or another. To put things in perspective it is estimated that ITP affects about 4000 people in the UK at any one time and something like 200,000 people in the United States.http://www.rarediseaseday.org/article/what-is-a-rare-disease
A disease or disorder is defined as a RARE DISEASE in Europe when it affects less than 1 in 2000 people. In the United States a disease or disorder is defined as RARE if it affects fewer than 200,000 people at any one time. ITP is thought to affect something like 4000 people in the UK at any one time.http://www.rarediseaseday.org/article/what-is-a-rare-disease
ITP Awareness Month - September 2013
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| Purple River, digital art (2013). Copyright Joan Lee |
Here is one of the digital artworks I contributed to the ITP Support Association's Pictures of Purple project on their Flickr site (link below). As with the "Digi Art Dabbles" in the Art Gallery section of Arty Transplantee, it was created using apps on a Samsung tablet computer. It incorporates elements from photoss as some of my paintings pasted in as a digital collage. I then did some cropping and adjusted colours, here tending towards purple or the primary colours, red and blue which make it.
ITP Support Association - Flickr group, including this September's Pictures of Purple (PoP Art) project.
http://www.flickr.com/search/?q=itp%20support%20association
ITP Support Asoociation - website
ITP and all that one year on - Summer 2013
I prefer to remember happier summer anniversaries than 1st “anniversary” of my ITP diagnosis at the end of July. Thankfully, though the anniversary passed fairly peacefully. Certainly a much happier over the weekend, among my folk at my parents’ house; and no nasty surprises when I saw the Haematologist at the end of the month.
I've been wearing the purple ITP Aware bracelet bought from the ITP Support Association, to mark the anniversary of my diagnosis and while at it think about other people who live with chronic conditions such as ITP and liver disease, among them children. Though it can be tough at times, I’m thankful to have been free such things during my childhood. I also feel for the parents, with all the worry they must have. In many ways it can be harder for parents / spouses / people looking after them, than it is for the patient. I thought that at the time of my transplant and with the ITP. Aside from the anxiety, there's lots to do on the practical front, which can be difficult if it is ongoing.
This time last year, I facing one of the most difficult periods of my life, with my biggest health crisis since my transplant. Well, the chronic rejection in the late 1990s was pretty serious but I saw that as part and parcel of life my new liver. Being in hospitalised with a new condition was a big shock – all the more a chronic, sometimes unpredictable one, acting at a fundamental level (the blood) . Not to mention the parallels with before. As I’ve said in My Story - ITP and all that the physical bruises healed more quickly than the mental ones.
After a hot walk along the River Wey to Godalming during the middle of July, I reflected on the time since my transplant and how fortunate I’ve been. I knew this walk well – one of my regulars from Guildford. One the first times I did it was not long before my transplant, then a few months afterwards when I went out sketching there with my father.
Having a liver transplant when I was still relatively young, made see some in a different perspective than usual, including, age and longevity. If I’d been alive any earlier than the late twentieth century, with the same liver thing (AIH), I doubt if I'd be here saying this now. I still like to try and remember just how lucky I am to have got my transplant when I did and so quickly. Recently, I heard on someone online who hadn’t been so lucky. She, too was in her 20s as well.
Here's to health, happiness and more art...
