How To Kick Neuropathy Into The Glossies

Today's post from positivelite.com (see link below) is a call for more publicity for neuropathy. Despite the statistic of 20 million Americans alone suffering from neuropathy, most people still have very little idea of what it is and what it means for people trying to live with it. This article calls for better advocacy for the disease.

How can we kick neuropathy into the glossies?
Tuesday, 30 September 2014 Author // Dave R 

Dave R: Despite between a quarter and a third of people living with HIV ending up with neuropathy, it still draws blank stares from most people When will neuropathy become sexy enough to hit the headlines?

“I hate to be a kicker, I always long for peace but the wheel that does the squeaking is the one that gets the grease.”‘The Kicker’ Josh Billings 1818-1885

Apparently the figure of twenty million Americans alone with neuropathy isn’t enough to make it a Twitter Trending Topic, or a Facebook phenomenon. That’s maybe understandable when you think of the average age of social networkers but the fact remains that, one way or another we have to get neuropathy taken seriously as a major health problem.

In an ideal world you’d expect the doctors, medical authorities and drug companies to take the initiative. After all, with those statistics, there’s surely money and reputations to be made, but apart from a few serious neurology and diabetes conferences (where solutions are genuinely looked for), there’s nothing in the mainstream media that makes Joe the plumber sit up and take notice. Why are we missing the target?

What do we really need and what are we really asking for?

From the patient’s point of view we pretty much need universal understanding that what we’re suffering from is debilitating and life changing. We also need treatments that are effective and not necessarily ‘borrowed’ from other diseases. To achieve that, we need to persuade the drug companies that it’s worth investing research money in:
new studies designed to find ways of repairing nerve damage;
finding new ways of dealing with the pain and discomfort and
identifying the true cause of someone’s neuropathy.

In those respects, our aims are probably the same as those of neurologists and specialists who deal with HIV, diabetes, cancer and all the other contributing diseases to neuropathy. Quite a lobby, you might think! Surely enough to stimulate the cogs and wheels of corporate medical science, but up until now, it hasn’t been enough; it’s still ‘Neuro...what?’

Time for patients to take matters into their own hands maybe: grab neuropathy by the short and curlies and make it the discussion of the day in every family home and medical boardroom in the land? Too aggressive? Maybe but thinking back; HIV wasn’t taken seriously, or viewed sympathetically and the fear wasn’t removed, until brave people got on their soap boxes and yelled and shouted until it was.

Now nobody is demanding that we take to the streets with neuropathy banners and placards outside city halls at this moment and it wouldn’t do much good anyway because we’d just be told to get in the ‘needy causes’ queue. However, in order to get effective treatment, we really need neuropathy research to advance more quickly than it does and in order to do that in the modern world, we have to give it an image attractive to the real powers that be; the media.



Advocacy is the word.

Wikipedia defines advocacy as:

...a political process by an individual or a large group which normally aims to influence public-policy and resource allocation decisions within political, economic, and social systems and institutions; it may be motivated from moral, ethical or faith principles or simply to protect an asset of interest. Advocacy can include many activities that a person or organization undertakes including media campaigns, public speaking, commissioning and publishing research or poll or the 'filing of friend of the court briefs'. Lobbying (often by lobby groups) is a form of advocacy where a direct approach is made to legislators on an issue which plays a significant role in modern politics.

So we know where to begin.

To give credit where it’s due, within the neuropathy communities, a lot of great work has already been done. The American Neuropathy Association for instance, has been untiringly active in this area since 1995 (although it is only recently that they have embraced HIV-related neuropathy into the fold) but this is a worldwide problem and patients and organisations in every country (if they exist) need to try to raise the awareness of the problems caused by neuropathy locally if possible.

Should we then concentrate on publicizing the plight of chronic pain sufferers, with the idea that chronic pain evokes more sympathy than the neuropathy that causes it? Or should we try to imprint the word ‘neuropathy’ onto every nation’s subconscious, thus prompting the question, ‘What is it?’ on everybody’s lips.

There are many (pretty dull) YouTube clips about neuropathy and websites, blogs and FaceBook pages too; yet the average person on the street still has little clue what it is, or how it makes people’s lives so miserable.

Do we perhaps need role-models? Of course we do but the number of ‘celebrities’ coming forward and declaring their neuropathy can be counted on the fingers of one hand (and statistically, there must be quite a few). You’d think there was a terrible stigma attached and you could maybe understand it if the only form of neuropathy was HIV-related but it’s not; diabetic neuropathy and other forms outnumber us almost everywhere.

So what’s the problem? Are even 20,000,000 Americans, too small a group to catch the eye of the world’s media? According to a Neuropathy Association summit meeting in December, 2010, as many as 8% of the world’s population has neuropathy and others claim that one in five people will get neuropathy before they die. More infohere.


So if these figures are even near to being accurate, neuropathy can hardly be deemed a ‘minority’ illness and therefore undeserving of media attention.

So what can we do?

It’s a dog-eat-dog advertising and publicity world and neuropathy is up against much ‘sexier’ diseases with high-impact media images. Many will say, “Hold on a minute, it’s not a competition. You can’t make an ad campaign out of people’s suffering!” but unfortunately that’s exactly what it is and that’s exactly what we need to do!

It’s important to know precisely what it is we want and just as importantly, to know which targets are realistic and which are a waste of well-meaning energy.

To my mind, the aim must be to try to achieve some of the following:
To raise neuropathy to a level of understanding amongst the general population equivalent to say, ulcers, heart attacks, emphysema and eczema. These are randomly chosen health problems which most people have heard of and have some idea of how they affect people.
To raise neuropathy to a level of understanding amongst the drug companies where they can see potential profits in finding effective treatments and can compete with each other to be the first to be able to ‘repair’ nerve damage, thus increasing their own public profile. We could whistle in the wind and hope that drug companies will see this as a noble cause for the betterment of millions of people but we all know it doesn’t work that way. What’s in it for them is a far better approach.
To stimulate support networks amongst local government, health councils, social services and health groups associated with linked illnesses, so that home doctors and neurologists can immediately refer someone to a support group if necessary. There’s only so much the doctors can do and that can leave the patient feeling distinctly unloved!
To form alliances with other patient groups dealing with neuropathy; especially concerning diabetes, cancer treatment and alcoholism amongst others. Together we are a much more powerful lobbying group.
To aim for awareness of the problem at local authority and right up to national government level. After all, the bottom line is that the money has to come from the top and the competition for national resources in these difficult times is cut-throat. We need allies in the corridors of power.
Lastly, to stimulate understanding within the HIV community itself that there is a large group of people with HIV who have something else nasty to deal with. This could be promoted alongside education about other growing HIV-related problems like Hepatitis, Anal cancer and Dementia.

Achieving any one or all of these aims could transform the face of neuropathy treatment across the world but how do we realistically go about it?

Each person who reads this is an individual who (unless he or she is in government) has a pretty small voice in a democracy and possibly no voice in other political structures. We have to tailor our advocacy to what we can do as individuals. It’s easy to preach that this, that, or the other must be done but that’s much easier said than done, especially if you’re also suffering from neuropathy symptoms yourself. So if you have the energy and will-power to have a go, let’s look at what is possible.

There are various well-established means of attracting attention to your cause: letter writing, phone calls, emails, individual visits, group visits, becoming part of a patient coalition are just a few actions that individuals can take.

The question is, who do you address these appeals to? Sometimes it depends on who you know, or who someone you know knows! However, generally, the individual feels pretty helpless in the face of large bureaucratic organisations. Choosing one means of asking questions maybe the most we can expect from people, Just writing a letter to the local health authority, or ringing a local government official responsible for health, or emailing an organisation, is already a positive step.

Drug companies for instance, need to be taken to task regarding their neuropathy medication policies. Asking them what their position on neuropathy is and what they’re prepared to do to help neuropathy sufferers may not get a reply but you will have sown the seed in someone’s mind that there may be a problem.

Telling your own story or the story of someone you know can also be very powerful. Maybe that can be done by starting a blog, or joining together with others to start a blog. They’re free and very easy to set up. Before you know it, people you never imagined will be reading about neuropathy. Imagine that happening across your country and something really begins to happen!



If you can and are not afraid of the publicity, post a video on YouTube or Vimeo, or one of the other video hosts and go for viral! It has never been easier for individual people to spread information across the world and differences can be made. From little acorns, big oak trees grow!

The most immediate and effective target for our advocacy must be the media and while we have touched on personal blogs, websites and YouTube videos, getting the message onto TV, radio, or in the newspapers and magazines, remains the most effective way of reaching people. It is however, probably the most difficult for the individual to break into. Not that you shouldn’t try; the media is constantly looking for interesting stories and if you can add just a little drama to the story (twenty million Americans with neuropathy for instance!), you may just be asked to present your argument on air, on line or in print.

However, it’s much more likely that larger groups will gain media attention. If you can join, or organise a patient coalition, that will immediately attract attention. Otherwise, asking organisations that deal with problems arising from HIV, or diabetes, or any of the other contributing diseases what information or help they can offer regarding neuropathy, will again alert people to the problem. Option here.

Web communities are also excellent means of creating a ‘bigger voice’. Every forum with neuropathy as its topic has a large following and is full of heart-rending stories but we need to get the message across the whole spectrum of health forums and especially those dealing with HIV.

I’m a dinosaur; I hate Twitter and Facebook, as means of communication but I do realise that I’m in the minority and many people love them and are experts in promoting hot topics. Please, if you have neuropathy, see what you can do. If you can make one person aware, there’s a good chance that they in turn will pass the story on to others.

Advocate to your own ability and do what you can. More info here. Nobody can ask for more but if you remember that you’re representing millions of people across the world, maybe we can remove the ignorance about this growing disease and stimulate action in treating it.

Our disease may not carry a death sentence but for many, it is a life sentence and we owe it to ourselves to make sure we’re not ignored!

To conclude, this is one of those subjects where you can inadvertently, very easily tread on people’s toes. Thousands of hard-working people have years of experience with various forms of advocacy; sometimes achieving great success and sometimes banging their heads against the brick walls of ignorance. To those people I sincerely apologise if this post seems simplistic, naive, or unrealistic.
 

 http://www.positivelite.com/component/zoo/item/how-can-we-kick-neuropathy-into-the-glossies

PARENTAL SMOKING PUSHES KIDS INTO POVERTY

Smoking is not only bad for your health; it also puts 400,000 children in poverty. Smoking places a financial burden on low income families, suggesting that parents are likely to forgo basic household and food necessities in order to fund their addiction, according to UK research published in the open access journal BMC Public Health.

This is the first UK study to highlight the extent to which smoking exacerbates child poverty. The findings are based on national surveys which estimate the number of children living in poverty by household structure. In 1999, the UK government announced a target to abolish child poverty by 2020, though this target is unlikely to be met. It is therefore crucial to identify avoidable factors that contribute to and worsen child poverty.

"Smoking reduces the income available for families to feed, clothe and otherwise care for their children living in low-income households. This study demonstrates that if our government, and our health services, prioritized treating smoking dependence, it could have a major effect on child poverty as well as health," says lead author, Dr Tessa Langley from the UK Centre for Tobacco and Alcohol Studies at the University of Nottingham.

Smoking is an expensive habit and one that impoverishes millions of people around the world. In the US, smokers spend less on housing than non-smokers and recent research in India showed that smoking cuts spending on food, education, and entertainment.

This new study estimates that 1.1 million children in the UK, almost half of all children in poverty, were living with at least one parent who smokes. A further 400,000 would be classed as being in poverty if parental tobacco expenditure were subtracted from household income.

In July 2014, the weighted average price of 20 cigarettes in the UK was £7 (GB). Although many smokers save money by opting for budget brands or switching to hand rolling tobacco, the cost of their smoking is still a substantial drain on the budgets of families living on low incomes. "The poverty threshold income level for a two parent household with two children is £392. If both parents are smokers, these households will be spending an average of £50 on tobacco per week, which is a big drain on an already tight budget," says Tessa Langley.

This is a key opportunity for the UK Government to take action to improve the lives of millions of children. "Tobacco control interventions to encourage low income smokers to quit, would not only improve health but also alleviate poverty," says Tessa Langley. Future studies are needed to determine what families sacrifice to sustain their habit, whether they do without fresh fruit or food in general; heating bills or clothing. This would provide a better picture on the burden of smoking in poor households.

New Research Into Healing Nerve Damage

Today's article from neurologywestla.com (see link below) is another interesting piece of research that is years away from being applicable to patients but is nevertheless evidence of the new impetus in nerve damage research that can only be good for the future. It talks about the discovery of a protein (Retinoblastoma) which is present in nerve cells. This protein normally acts as a 'stopper' to nerve growth. It's thought that by inactivating this protein in some way, damaged nerves will be able to regenerate and grow again. That of course is a very simplistic summary and the research is still at an early stage where it's being carried out on animals. However, most people will get the idea and be able to follow the logic. Now we have to wait ten years until it's proved to be a successful process in humans.

Peripheral Neuropathy And Injuries Causing Nerve Damage May Be Healed With New Technique
New Technique for Peripheral Neuropathy
By Susan Scutti | Apr 22, 2014
Posted by npatel on May 1, 2014 

Canadian scientists discovered a crucial molecule, a protein called Retinoblastoma (Rb), that directly regulates nerve cell growth and may be helpful someday in healing peripheral neuropathy.

Many people with diabetes experience neuropathy, a painful form of nerve damage that cannot always be treated effectively with drugs. In their research of the condition, scientists at University of Calgary’s Hotchkiss Brain Institute discovered a mechanism that promotes growth in damaged nerve cells. In fact, the team of researchers discovered a crucial molecule that directly regulates nerve cell growth. “We made the surprising discovery that a protein called Retinoblastoma (Rb) is present in adult neurons,” said Dr. Doug Zochodne, a professor in the Department of Clinical Neurosciences, and author of the study. “This protein appears to normally act as a brake — preventing nerve growth. What we have shown is that by inactivating Rb, we can release the brake and coax nerves to grow much faster.”

Neuropathy, which creates a tingling or burning sensation, is a direct result of nerve damage. Peripheral nerves, which connect the brain and spinal cord to the body, help us feel sensation and also enable movement. Peripheral neuropathy, which causes numbness and pain in your hands and feet, may be the result of any number of factors, including injuries, infections, and even exposure to toxins. Cancer patients, for instance, experience peripheral neuropathy during or following toxic chemotherapy. About 60 to 70 percent of people with diabetes also encounter this condition, with the risk rising with age and duration of their illness. All too common, diabetic neuropathy is more prevalent than multiple sclerosis, Parkinson’s disease, and amyotrophic lateral sclerosis (ALS) combined. Although for some people, the symptoms of peripheral neuropathy may improve over time, this is not the case for all and for this reason, researchers would like to understand how exactly it works.

Based on his understanding of cancer, Zochodne and his research team decided to look for Retinoblastoma in nerve cells. “We know that cancer is characterized by excessive cell growth and we also know that Rb is often functioning abnormally in cancer,” explained Zochodne in a press release. “If cancer is able to release this brake and increase cell growth, we thought we’d try to mimic this same action in nerve cells and encourage growth where we want it,” he said.

In their experiments using cells and animals, the researchers shut down Retinoblastoma in the peripheral nervous system for a short span of time and carefully observed the results. As hypothesized, they saw new growth without any apparent negative effects. Now, they are wanting to advance their experiments to the point of working with humans and in so doing, they hope their work may lead to safe treatments for patients suffering from neuropathy and other forms of nerve damage.

Source: Christie KJ, Krishnan A, Zochodne D, et al. Enhancing adult nerve regeneration through the knockdown of retinoblastoma protein. Nature Communications. 2014.

http://neurologywestla.com/peripheral-neuropathy-and-injuries-causing-nerve-damage-may-be-healed-with-new-technique/

With Neuropathy Dont Let Your Body Fall Into A Disuse Syndrome

Today's short post from neuropathydr.com (see link below) is as good an argument for exercising if you have neuropathy as you'll find. One of the best reasons for exercising (however uncomfortable the idea feels) is that your muscles, joints and nervous system will degenerate through disuse. Especially as you get older and the pain and your lifestyle mean that your life by definition becomes more sedentary, it's important to keep as active as possible. If your neuropathy is affecting more parts of your body than just your feet and legs (autonomic neuropathy) then it's vital to keep moving in some way or other, so that the organs, muscles and joints still have something to work for. The article is short but makes the point very clearly. Well worth a read.

Disuse Syndrome
Posted by john on February 13, 2017

In our last post, we discussed how exercise can help control the symptoms of your underlying illness (whatever caused your autonomic neuropathy). Today we’re going to discuss the effects of not exercising, which are called disuse syndrome.

Use Vs. Disuse

When you’re thinking about starting an exercise program and you’re thinking about how dangerous it can be, you also need to consider the effects of not starting an exercise program.

The effects of not exercising are called disuse syndrome. If your level of activity seriously out of sync with your level of inactivity, you can develop:

• Decreased physical work capacity

• Muscle atrophy

• Negative nitrogen and protein balance

• Cardiovascular deconditioning

• Pulmonary restrictions

• Depression

The effects of any of these symptoms of disuse syndrome in combination with your autonomic neuropathy symptoms can make a bad situation even worse.

The very nature of your autonomic neuropathy can affect the systems that are most sensitive to the effects of exercise. Any exercise program you begin should be designed and monitored by a medical professional well versed in the effects of autonomic neuropathy, like your NeuropathyDR® clinician.

Autonomic neuropathy can have a serious effect on the very systems in the body that are directly affected by exercise. Make sure you talk to your healthcare provider before you start an exercise program and let them monitor your progress.

For more information on coping with neuropathy, get your Free E-Book and subscription to our newsletters at http://neuropathydr.com.

http://neuropathydr.com/disuse-syndrome/