|
|
|
|
|
|
|
|
|
Posted: Mon Jul 21, 2008 7:52 am
A place to post links to news articles on the various illnesses related here.
A break-through in research or someone's experiences, it will all be here here.
Updates
21st July 2008- Article on living with Multiple Sclerosis added. 29th July 2008- Article on Alzheimers drugs added. 1st August 2008- Article on research in to Lou Gehrig's disease (ALS/MND) added. 18th August 2008- Pratchett criticises Alzheimer's drug ruling. 31st January- MS Stem-cell Treatment "Success"
|
 |
 |
|
|
|
|
|
|
|
|
|
|
|
|
Posted: Mon Jul 21, 2008 7:54 am
http://news.bbc.co.uk/1/hi/scotland/7508087.stm"It was January 2000 and I'd just started a new job, my dream job as political correspondent for BBC Scotland. I was very busy, working long hours, so I didn't have much time to pay attention to this strange tingling in my face, but the tingling grew until eventually everything to the left was tingling and pins and needles, and everything to the right was fine. I convinced myself the problem lay in my wisdom teeth and I'd have to have them extracted: a prospect that terrified me. So, I went to my GP, sure I was wasting his time, and that he would send me to the dentist. He didn't. Instead he made me an appointment with the neurologist at the Southern General Hospital in Glasgow for the next day. Despite the speed of the appointment, I didn't realise the seriousness of the situation. The neurologist did a few tests, asked me to move my legs about, and examined my face. He said: "I think it's inflammation of the nerves, but to make sure we should get an MRI scan done, and we'll do that tomorrow." I still didn't think any of this was a big deal. I went along for the MRI scan and was called in for diagnosis. I remember sitting in the waiting room and as I was getting up to go across, feeling a complete fraud, and this lady said to me as I was walking away, "you've got nothing to worry about, you're very healthy". And I walked away past her along to the neurologist's office thinking you're right, I've nothing to worry about, I'm a complete fraud, what a waste of time. I went in and sat down opposite the neurologist, noticed there was a nurse there as well, which struck me as a bit strange, but I didn't really think too much about that. And then the neurologist said: "Yeah, the MRI scan that has confirmed that it is inflammation of the nerves". And I'm thinking, "fine, well you knew that already apparently". But the shock hit me when he added: "And that is eh multiple sclerosis." Back then I didn't know anyone with multiple sclerosis, no-one in my family had the disease, and it wasn't an illness I knew much about. But since, I've learned Scotland is believed to have the highest rates of multiple sclerosis in the world. About 10,500 - or one in 500 people here - has MS. Their symptoms range from the mild and hidden, to the more severe. For me, eight years ago it was a tingling in my face, now I get tired more easily and sometimes have to use a stick to walk. In terms of the progression of the disease, the most frustrating thing is not knowing what the future holds. MS is not something I think about every minute of every day, but it is something I've had to face while making a BBC documentary. I'm determined to find out why Scotland has such a high rate of the disease. Whenever I mention the statistics to people the immediate response is always the same - Why? Why is that? Well the simple answer is - no-one knows. As a journalist, it's annoying not to be able to find a satisfactory answer to that question and as someone living with MS it's extremely frustrating. Building blocks I wanted to delve deeper, and that's why I've spent the last few months investigating the disease for the documentary "Scotland's Hidden Epidemic: The truth about MS", to be broadcast on Wednesday, July 23, at 2245 BST. My journey to find out about this curious connection between MS and the country I love, where I was born and grew up is what this programme is all about. I've travelled to Orkney and Canada, interviewed world leaders in the study of MS and met other people living and coping with MS just like me who are keen to find out why it's so common here. MS can often quite literally be mapped along lines of latitude. It's more common the further north you travel from the equator - and lack of sunlight and Vitamin D are all factors. Another theory is that a virus triggers the onset of the illness. And it looks like it's probably a combination of all these things - a combination of building blocks - building up to MS. But these are not the only factors in explaining why and where MS occurs. Genetics seem to play a role in all this. Dr Jim Wilson of Edinburgh University has just launched a major study looking at MS in the Northern Isles. Orkney and Shetland are widely believed to have the highest rates of MS on the planet. Dr Wilson wants anyone with MS, whether an Orcadian living at home or away, to get in touch. So, could there be a Scottish gene, or genes? Could MS really be something we Scots have taken around the globe over the centuries? It's a startling thought, and one which I investigate in the documentary. It's been tough at times. MS is a disease I have, but not one I think about every minute of every hour of every day. But it's also been fascinating, and inspiring. And, however the mystery tour of my MS ends, finding a cure or even some answers as to why it's so common here, would definitely be a very good ending to my story of MS."
|
 |
 |
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
Posted: Mon Jul 21, 2008 9:12 pm
The post you are trying to access is imaginary.
Akibe;; There was an article on a possible drug for eczema in the wall street journal about a week ago, when I was out. You might already know about it, but I'll get the name and info on it to post for everyone.
I thought of you when I read the article. <333
Edit: the drug is called alitretinoin, and it's being considered for treatment of severe hand eczema. There was a study in 2004 which revealed it effective in most cases with a high dosage.
"...analysts expect European regulators to make a decision on alitretinoin before the end of the year. Late-stage clinical studies show the drug isn't only effective at clearing eczema from the hands, but also helps patients who didn't respond to topical creams and patients who require more than one treatment." (wsj, Wed. July 16)
Please rotate your computer 90 degrees and try again.
|
 |
 |
|
|
|
|
|
|
|
|
|
|
|
|
Posted: Wed Jul 23, 2008 9:19 am
Whoops, I meant to lock this thread >.<
Me and my dodgy skin thank you MM! Happily mine isn't severe at the moment, merely mild and only on one elbow. But it's good to know that they're finding new treatments, since there's a genetic fator to eczema, my children could end up with it sad
|
 |
 |
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
Posted: Wed Jul 23, 2008 9:50 am
The post you are trying to access is imaginary.
Oops. But it might be easier if everyone posts what they discover...?
You're welcome. (: I'm glad they're finding new applications for drugs. I think alitretinoin was originally a cancer drug... I really hope it's successful.
Oh, and for NF2, Avastin, a chemotherapy drug, seems to work really well. Out of the six patients my doctor collected data on, one person's tumors stopped growing, another saw improvement in hearing, and the other four all saw dramatic decrease in the size of their tumors. >w It's quite expensive at the moment, because it's not an FDA approved usage of Avastin and most insurance policies don't cover it, but it's really promising.
I'm excited, as this could potentially 'cure' the disease. The worst that seems to happen so far is the tumors stop growing. Statically improbable complications probably won't show up in such a small pool, so that's something to worry about, but everything has its risks.
Please rotate your computer 90 degrees and try again.
|
 |
 |
|
|
|
|
|
|
|
|
|
|
|
|
Posted: Tue Jul 29, 2008 12:56 pm
http://news.bbc.co.uk/1/hi/health/7525115.stmAlzheimer's drug 'halts' declineUK scientists have developed a drug which may halt the progression of Alzheimer's disease. Trials of the drug, known as rember, in 321 patients showed an 81% difference in rate of mental decline compared with those not taking the treatment. The Aberdeen University researchers said the drug targeted the build-up of a specific protein in the brain. Alzheimer's experts were optimistic about the results, but said larger trials were now needed. Presenting the results at the International Conference on Alzheimer's Disease, Professor Claude Wischik said the drug may be on the market by 2012. Patients with mild to moderate Alzheimer's disease were given either 30, 60 or 100mg of the drug or a placebo. The 60mg dose produced the most pronounced effect - over 50 weeks there was a seven-point difference on a scale used to measure severity of dementia. At 19 months there was no significant decline in mental function in patients taking the drug, the researchers said. Imaging data also suggests the drug may be having its biggest effect in the parts of the brain responsible for memory. The link between clumps or "tangles" of protein inside nerve cells in the brain and Alzheimer's disease was first made over 100 years ago. Later shown to be made up of a protein called Tau, the tangles build up inside cells involved in memory, destroying them in the process. Rember, or methylthioninium chloride, is the first treatment specifically designed to target the Tau tangles. Other treatments for Alzheimer's tend to focus on combating a waste protein in the brain, beta-amyloid, which is known to form hard plaques. The latest work suggests targeting Tau may produce better results. Methylthioninium chloride is more commonly used as a blue dye in laboratory experiments. Professor Wischik discovered it by accident 20 years ago, when a drop in a test tube led to the disappearance of the Tau protein he had been working on. "We have demonstrated for the first time that it may be possible to arrest the progression of this disease by targeting the tangles which are highly correlated with the disease," he said. "We did an analysis of the effect size at 24 weeks and at 50 weeks compared to the average effect size of the current treatments and it was about two and a half times better," he added. Larger trials of the drug are planned to start in 2009, and researchers are also investigating whether the drug has a role in prevention of the disease in the first place. Professor Clive Ballard, head of research at the Alzheimer's Society, said: "This is a major new development in the fight against dementia. "It is the first realistic evidence that a new drug can improve cognition in people with Alzheimer's by targeting the protein tangles that cause brain cell death. "This first modestly sized trial in humans is potentially exciting. "It suggests the drug could be over twice as effective as any treatment that is currently available." Rebecca Wood, chief executive of the Alzheimer's Research Trust, said: "In this exploratory trial, rember reduced the decline in blood flow to parts of the brain that are important for memory. "This bodes well but we need more human trials to assess the treatment's possible side effects." She added the fact the trial was funded by a pharmaceutical company highlighted the lack of funding for Alzheimer's research in the UK.
|
 |
 |
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
Posted: Fri Aug 01, 2008 1:48 pm
link.Cell changes may help Lou Gehrig's researchBy RANDOLPH E. SCHMID, AP Science WriterThu Jul 31, 5:04 PM ET Using a new technique to reprogram cells, scientists are growing neurons from people with Lou Gehrig's disease, a possible first step in understanding how the deadly illness develops. Technically known as amyotrophic lateral sclerosis, the disease damages the nerve cells in the brain and spinal cord, eventually leading to death. The ALS Association estimates that as many as 30,000 Americans may have the disease at any given time. "What we now have in the culture dish is cells that have the same genetic makeup as the ALS patient and they are the same cells that are affected by the disease," said Dr. Chris Henderson, co-director of the Center for Motor Neuron Biology and Disease at Columbia University. That means that, for the first time, scientists hope to be able to observe the development of the disease in the cells and, from that, possibly begin studies of treatments. "There is no way we could go to an ALS patient and take these cells," Henderson pointed out. Instead, they used skin cells from two patients, aged 82 and 89, and were able to reprogram the cells into a type of adult stem cell, and from that into nerve cells, the researchers report in Friday's edition of the journal Science. Co-author Dr. Kevin Eggan of the Harvard Stem Cell Institute said what they hope to do next is study the cells in the lab and compare them with cells of someone who doesn't have that disease. ALS is a slowly developing disease and the test cells have not yet begun to show illness, they noted. But in similar studies in mouse cells the cultured neurons did develop the disease. Dr. Lucie Bruijn, science director and vice president of the ALS Association, called the work a first step. "This is the beginning," she said in a telephone interview. "It's a most important approach." "Now we have to figure out whether these motor neurons are able to mature," she added. "For these to be useful for drug development we need mature motor neurons." The researchers worked with a form of ALS that is caused by a defect in a single gene, a rare form of the disease. But Henderson said that they even though the vast majority of cases are caused by different triggers, they hope to learn about the mechanism of the disease, how it develops after being triggered. "Up until now, it's been impossible to get access to the neurons affected by ALS and, although everyone was excited by the potential of the new technology, it was uncertain that we would be able to obtain them from patients' skin cells," Henderson said. "Our paper now shows that we can generate hundreds of millions of motor neurons that are genetically identical to a patient's own neurons. This will be an immense help as we try to uncover the mechanisms behind this disease and screen for drugs that can prolong life." The research was supported by the Harvard Stem Cell Institute, Project ALS, the SMA Foundation, MDA Wings Over Wall Street, the Spina and Bowen families, the New York Stem Cell Foundation, the National Science Foundation and the John D. and Catherine T. McArthur Foundation.
|
 |
 |
|
|
|
|
|
|
|
|
|
|
|
|
Posted: Mon Aug 18, 2008 1:16 am
http://news.bbc.co.uk/1/hi/health/7561724.stmPratchett Criticises Drugs RulingAuthor Terry Pratchett has criticised a decision to limit the drug Aricept through the NHS to people in the later stages of Alzheimer's disease. He told the BBC's Panorama programme the National Institute for Health and Clinical Excellence's ruling "feels like an insult" and needs a rethink. NICE decided the drug was not cost-effective in the early stages. Pratchett, who has sold 55 million books worldwide, has PCA, a rare early-onset form of the disease. He was diagnosed with PCA, which affects the back of the brain and therefore vision and motor skills, in December 2007. Speaking to Panorama for its programme The NHS Postcode Lottery - It Could be You, he said his doctor told him about Aricept straight after he was diagnosed, but she initially said she could not prescribe it for him. "I didn't have a specialist at that time and so I was a bit in limbo," he said. "I think she took pity and sort of did it." Difficult route He now pays for his Aricept, which is prescribed to him by a specialist in Bath, but is highly critical of the Byzantine route he had to take to get the drugs he says he needs: "It's probably easier to get drugs off Fat Charlie round the back of the bus station than it is to get medicines - but there we are," he told Panorama. The head of NICE, Andrew Dillon, told Panorama: "The evidence is absolutely clear." "The extent of the benefits and the numbers of patients involved" meant the NHS should not give the drug to patients before they, "as they inevitably will, move into the moderate stage of the disease", he said. Recommendation reversed NICE guidance in 2001 recommended the drug - which can make it easier to carry out everyday tasks - should be used as standard. But revised advice published in November 2006, stated that Aricept should only be prescribed to people with moderate-stage disease. NICE said that Aricept, which costs about £2.50 a day, did not make enough of a difference to recommend it for all patients and therefore was not good value for money. Pratchett acknowledges that through his success as an author - his Discworld series has sold 55 million books worldwide - he is easily able to afford to Aricept. But he is concerned for other people with Alzheimer's who lack his means. "I feel particularly angry on behalf of early onset patients because it feels like an insult and the younger you are the more insulting it is," he says. "A lot of people with early onset have got dependents both younger and older and they're trying to hold down a job." "It is a really nasty disease and I cannot imagine cancer patients being denied a drug like this in similar circumstances," Pratchett added. Fear factor He says that he has noticed a huge change in his condition since he started taking Aricept. "If I'm not on the drug I'd find certain things difficult, doing up buttons so you get a line of buttons in the shirt done up right can be a problem," he said. "In theory I should be that much worse, but my wife has said that I'm better now than I was in the autumn." But Pratchett says that the advantages of taking the drug are wider than that. "Alzheimer's scares people and at four o'clock in the morning it scares me, and Aricept is well worth having for the relief that it brings." He said that the decision to not give it to early stage sufferers, but to provide free treatment for obesity and sexual impotence indicates the NHS "priorities are not right". And the author also told Panorama that he thinks it is possible that NICE's decision was in part shaped by the fact that Alzheimer's is a disease predominantly affecting older people, whom he says are thought of as "a softer target".
|
 |
 |
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
Posted: Sat Jan 31, 2009 2:19 am
http://news.bbc.co.uk/1/hi/health/7858559.stmMS Stem-cell Treatment "Success"Stem-cell transplants may control and even reverse multiple sclerosis symptoms if done early enough, a small study has suggested. Not one of 21 adults with relapsing-remitting MS who had stem cells transplanted from their own bone marrow deteriorated over three years. And 81% improved by at least one point on a scale of neurological disability, The Lancet Neurology reported. Further tests are now planned, and a UK expert called the work "encouraging". MS is an autoimmune disease which affects about 85,000 people in the UK. It is caused by a defect in the body's immune system, which turns in on itself, causing damage to the nerves which can lead to symptoms including blurred vision, loss of balance and paralysis. At first, the condition mostly causes intermittent symptoms that are partly reversible. Over a 10-15 year period after onset, most patients develop secondary-progressive MS, with gradual but irreversible neurological impairment. It is not the first time this treatment - known as autologous non-myeloablative haemopoietic stem-cell transplantation - has been tried in people with MS, but there has not been a great deal of success. The researchers at Northwestern University School of Medicine in Chicago said most other studies had tried the transplants in people with secondary-progressive MS where the damage had already been done. In the latest trial patients with earlier stage disease who, despite treatment had had two relapses in the past year, were offered the transplant. Stem cells were harvested from the patients and frozen while drugs were given to remove the immune cells or lymphocytes causing the damage. The stem cells were then transplanted back to replenish the immune system - effectively resetting it. Five patients in the study relapsed, but went into remission after receiving other therapy. The researchers are now doing a randomised controlled trial in a larger number of patients to compare the treatment with standard therapy. Study leader Professor Richard Burt said this was the first MS study of any treatment to show reversal of damage. "You don't want to wait until the horse has left the barn before you close the barn door - you want to treat early. "I think the reversal is the brain repairing itself. "Once you're at the progressive stage you have exceeded the ability of the brain to repair itself," he said. However, he cautioned that it was important to wait for the results of the larger trial. And that he would not call it a cure but "changing the natural history of the disease". Dr Doug Brown, research manager at the MS Society, said the results were very encouraging. "It's exciting to see that in this trial not only is progression of disability halted, but damage appears to be reversed. "Stem cells are showing more and more potential in the treatment of MS and the challenge we now face is proving their effectiveness in trials involving large numbers of people."
|
 |
 |
|
|
|
|
|
|
|
|
|
|
|
|
Posted: Tue Mar 24, 2009 5:39 pm
for those in the U.S., this is really nice~ http://news.yahoo.com/s/ap/20090324/ap_on_he_me/insurers_sick_peopleInsurers offer to stop charging sick people moreBy RICARDO ALONSO-ZALDIVAR WASHINGTON – The health insurance industry offered Tuesday for the first time to curb its controversial practice of charging higher premiums to people with a history of medical problems. The offer from America's Health Insurance Plans and the Blue Cross and Blue Shield Association is a potentially significant shift in the debate over reforming the nation's health care system to rein in costs and cover an estimated 48 million uninsured people. It was contained in a letter to key senators. In the letter, the two insurance industry groups said their members are willing to "phase out the practice of varying premiums based on health status in the individual market" if all Americans are required to get coverage. Although the letter left open some loopholes, it was still seen as a major development. "The offer here is to transition away from risk rating, which is one of the things that makes life hell for real people," said health economist Len Nichols of the New America Foundation public policy center. "They have never in their history offered to give up risk rating." "This letter demonstrates that insurance companies are open to major insurance reform, and are even willing to accept broad consumer protections," said Sen. Jeff Bingaman, D-N.M., a moderate who could help bridge differences on a health care overhaul. "It represents a major shift from where the industry was in the 1990s during the last major health care debate." Insurers are trying to head off the creation of a government insurance plan that would compete with them, something that liberals and many Democrats are pressing for. To try to win political support, the industry has already made a number of concessions. Last year, for example, insurers offered to end the practice of denying coverage to sick people. They also said they would support a national goal of restraining cost increases. The latest offer goes beyond that. Insurance companies now charge very high premiums to people who are trying to purchase coverage as individuals and have a history of medical problems, such as diabetes or skin cancer. Even if such a person is offered coverage, that individual is often unable to afford the high premiums. About 7 percent of Americans buy their coverage as individuals, while more than 60 percent have job-based insurance. "When you have everyone in the system, and you can bring (financial) assistance to working families, then you can move away from health status rating," said Karen Ignagni, president of America's Health Insurance Plans, the leading trade group. The companies left themselves several outs, however. The letter said they would still charge different premiums based on such factors as age, place of residence, family size and benefits package. "If the goal is to make health care affordable, this concession does not go far enough," said Richard Kirsch, campaign manager for Health Care for America Now. "It still allows insurers to charge much more if you are old." His group, backed by unions and liberals, is trying to build support for sweeping health care changes. Importantly, insurers did not extend to small businesses their offer to stop charging the sick higher premiums. Small employers who offer coverage can see their premiums zoom up from one year to the next, even if just one worker or family member gets seriously ill. Ignagni said the industry is working on separate proposals for that problem. "We are in the process of talking with small-business folks across the country," she said. "We are well on the way to proposing a series of strategies that could be implemented for them."
|
 |
 |
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
Posted: Fri Aug 28, 2009 3:55 am
http://news.bbc.co.uk/1/hi/health/8212461.stmNHS dystrophy care 'inadequate'NHS care for patients with muscle-wasting disorders is often "inadequate and not acceptable", MPs and peers say. The All-Party Parliamentary Group on Muscular Dystrophy inquiry found huge variations in life expectancy. People with the disorders also often faced long waits for wheelchairs and having to pay for physiotherapy, the report said. The government said it expected the local NHS to provide services to meet people's needs. There are more than 60 different types of muscular dystrophy and related neuromuscular conditions, affecting some 60,000 people across the country. They cause muscles to waste and weaken, making it hard to do even the most simple tasks and many of those affected do not make it to adulthood. The cross-party group of MPs and peers, which was supported by the Muscular Dystrophy Campaign in its inquiry, gathered evidence from doctors, patients and health managers. It found there was a "postcode lottery" when it came to life expectancy, which politicians said would have been a national scandal if it had been related to cancer. In the north east, sufferers can expect to live to 30 whereas elsewhere those with the condition struggled to reach 18. The report also accused the NHS of relying on charities to provide support to families affected. Dave Anderson, the MP who led the inquiry, lost a brother and sister to the disease. He said: "It is very clear that the standard of care provided to these patients by the NHS is often inadequate and not acceptable." 'Appalled'Cross-bench peer Lord Walton, a founder of the Muscular Dystrophy Campaign, was one of the key members of the group and he said he was "appalled" by much of the evidence heard. The report concluded by calling for official guidelines to be given to trusts to ensure high standards of care as well as a review of skills in the health workforce. It also recommended that each of the 10 health regions in England and Scotland, Wales and Northern Ireland should appoint a specialist to oversee services. Phillippa Farrant has a seventeen-year-old son with a rare muscle-wasting condition and she said getting treatment on the NHS had been a struggle. "You just feel as though you are battling the system the whole time and that your whole life is based around hospital appointments," she said. "We have got something fairly local but in other parts of the country they are travelling hundreds and hundreds of miles to get to the specialist places, which is completely wrong." 'Meeting community needs'Philip Butcher, chief executive of the Muscular Dystrophy Campaign, agreed that improvements were needed. "I hope that the report will help to put pressure on the NHS to start providing the standard of care that these patients so dearly need and deserve." A spokesman for England's Department of Health said it recognised the importance of providing high-quality, personalised care for people with long term conditions such as muscular dystrophy. He added: "We expect the NHS to commission services to meet the needs of its local communities. "However, muscular dystrophies are to be included in an updated list of specialised services to help local NHS organisations plan services." A Welsh Assembly government spokeswoman said it was already taking action to improve muscular dystrophy services.
|
 |
 |
|
|
|
|
|
|
|
|
 |
|
|
|
|
|
|