The Skin & I

I recently received an email from Morgellons UK and organisation that seeks to support anyone affected by the condition known as Morgellons. Now I had never heard of such a condition so went hunting on the Internet and what I found had me intrigued.

Morgellons is a condition which was first proposed in 2002 by Mary Leitao, a mother from Pennsylvania USA who refused to accept the diagnoses given by dermatological specialists about her son who had symptoms of a dermatological condition.

Having failed to convince doctors that the signs and symptoms which she said were specific to her sons condition – a multitude of ‘fibres’ which appeared to extrude from the skin -

Optical Image of fibres

and it having been suggested that this was either delusional parasitosis or that she was suffering from Munchhausen’s by proxy, she set up the Morgellons Research Foundation (now defunct) to look into what she fervently believed, and I assume still believes, was an unclassified new disease.

Over the intervening years there has been much written about Morgellons (2.6m hits on Google for the word alone), but having read many of the reports associated with it online, I am drawn to the conclusion that this is not a condition that stands up to the rigours of scientific investigation and that it is largely the power of the Internet that has given the concerns of a mother a life of its own by playing on peoples vulnerabilities and their need for answers.

My sceptical eyebrows were immediately raised when I first visited the Morgellons UK website. In trying to describe this supposed condition they list 60 signs and symptoms in 10 bodily systems ranging from the specific, “Fibres coming from skin pores and lesions, of different lengths and colours: (blue, white, transparent, black, red)” to the frankly general, “Distended abdomen“. I am not saying that people who believe they have Morgellons are not in need to help or treatment, but I can think of no other condition, apart from terminal diseases, where so many systems of the body are affected in so many ways and I cannot see any report of this being a terminal condition.

I will say no more about the background or claims that have been made about Morgellons. I leave it to you to do your own research online or elsewhere and make up your own mind,

In July 1985 Margaret Thatcher, then UK Prime Minister, gave a speech to the American Bar in which she said, referring to the problems in Northern Ireland,

“And we must try to find ways to starve the terrorist and the hijacker of the oxygen of publicity on which they depend.”

I have have to agree to the spirit of this statement when it comes to the Internet and especially where it concerns our health. It is so easy these days for anyone to propose ideas online without any hard evidence and it is inevitable that people who are struggling with their lives will take up anything, no matter how bizarre or unproven. Our desire to persist as healthy individuals is very strong and will at times, overcome our intellectual capacity to make truly informed choices.

Please don’t get me wrong, I am not suggesting any policing or control of the Internet, far from it, but I do hope that we can all be a tad more sceptical when it comes to reading what at face value may appear to be the lifeline we are seeking. I am convinced that there is much that classical medicine can learn from alternative treatments, but at the same time some of the alternatives that are suggested by their proponents are just alleys for the blind to lead the blind up.

The power for good of the Internet is boundless, but in rightly continuing to give free and unhindered access to anyone, we should all be aware of the pitfalls as well and not enter into its domain with our rose coloured spectacles firmly stuck in front of our eyes.

You may remember that I mentioned in a previous post (‘Buy Shares In Pharmaceuticals Now!‘) that I had started on a new regime of oral steroids. Well it is 75 days since I started and I thought I would take a moment to bring you up-to-date with what has happened and my thoughts about it.

I am still taking 20mg Prednisolone daily, keeping up with my twice daily anti-histamines (Atarax) and applying Dermovate ointment locally to the nodules. As the weeks have rolled by I have noticed a very distinct reduction in irritation. It is rare for me to be aware of my skin as I have done in the past on a daily basis. However, having scratched for so long I have developed a bad habit, and when I don’t have anything to scratch, I find something to make itch. Bizarre or what!! This habit is something I am now working. I am aware of it, even though it often happens unconsciously, and I am trying hard to consciously stop doing it.

As a result of not scratching so much the lesions are slowly healing up. They go from a scabby stage to a raised crusty top which eventually smooths out to a raised bump. After some more time these gradually flatten to a pale scar. The images below taken today illustrate these stages.

Left Forearm

Left Wrist

Compared with the images I posted some 19 months ago (‘Down In a Very Dark Place‘) this is an incredible change; and it doesn’t stop there!

I had been on anti-depressants for nearly two years, but before Christmas 2011 I decided to stop them. Whether it is because the slight sedative effect they had has worn out of my system, or that in combination with the relief I have had since starting the steroids, I don’t know, but what I have experienced is a lifting of my mood and an injection of energy into my life. I’m actually enjoying it fully for the first time in a long time.

I am also sleeping better because I am not regularly woken up scratching the hell out of my skin! Overall I think (and hope) that things are finally moving in the right direction. Of course I cannot claim that my NP is on the way to being cured. At some point in the not too distant future I will have to stop the steroids. What happens when I do will of course be the subject of a future posting, but for the time being I am keeping everything crossed that this progress will be maintained.

And….it’s almost Spring. Hoorah!! (contd.)

Dazzled by Susan Bourdet

PS If you have a moment please join my cause ‘Save The Dogs’ (https://www.causes.com/causes/655034-save-our-dogs/actions), join, sign the petition and take the pledge. We know it’s a dog’s life, but let’s make it better.

A couple of weeks ago I put a poll in the NP-UK Facebook group asking the following question:

“Would you like this Facebook group to move from being closed i.e. restricted membership with posts hidden from public view, to being open where anyone can join and posts can be read?” – Yes or No

I raised this issue following on from my last post in which I suggested that unless we publicise and educate we will be less likely to promote the need for more research and understanding of NP, both within the medical world and in the public domain. By doing so I hoped that in the longer run the problems sufferers of NP cope with could be reduced.

After a week or so’s airing of the question the result of the poll was was reached as follows:

Out of the 43 votes. For an open group: 8 (19%); For a closed group: 35 (81%)

I was pleased to see that not only did members vote in the poll but also opened up a debate on the issue. There were counterbalancing views but overall the majority of the personal comments pressed for the group to remain closed.

• “I definitely wouldn’t want the Facebook group open to anyone. I feel very safe knowing I can talk openly to my NP family knowing that we are there for each other and there are no judgements about anyone.”
• “If the group went to “open” status I would leave, I even hide status updates from my ordinary page as I’m not comfortable with all my friends and colleagues seeing NP comments and pictures.”
• “It is a privilege to have everyone able to share their private problems and outsiders wouldn’t get that.”
• ” What a shame (sic: other comments against), I really don’t see the use to bitching and complaining to each other, I guess misery loves company. But I don’t want to be miserable.“

My personal position was to open up the group, but the decision of the majority who voted had to be observed. It comes as no surprise that this result was arrived at. I come from a community that has suffered from a lack of assertiveness and courage to be open both individually and collectively over the issues which cause them problems i.e. the transgender community.

For the seven years as a trustee for The Gender Trust (3 of those as Chair), I was frustrated by a community that shied away from the public gaze in fear of what exposure might bring. Politically this weakened the charity as it could not speak with authority, merely reflecting the opinions of a lesser cohort of people for whom these fears held no sway.

I am not unsympathetic to those people with NP who do not wish to disclose their status publicly. I understand the embarrassment they may feel, but I still maintain that the politics of the many is much more powerful than the politics of the few.

However I digress. Having seen the result, I was therefore surprised when one member came up with a novel solution that would help both sides of the argument. “Why“, they said, “don’t we just have up another group which is open, whilst leaving this one closed?“. Why indeed? And thus was born Nodular Prurigo Awareness, a group where original members of the NP-UK group can join and they, and anyone else for that matter, can discuss issues openly, whilst protecting those in the original group from disclosing their private thoughts. What a result!

Overall I think the democratic way in which this issue was resolved without having one side feel that they were hard done by, was a tribute to the members who embraced democracy, but in doing so found an even better way of working together to their mutual benefit.

New name, new future?

Another thing that I’ve noticed within the Facebook group is the increasing number of members from outside of the UK. As a piece of fun I decided to plot everyone on a Google Map and realised that although the majority of members still come from the UK, the name of the website and the Facebook group did not reflect the international nature of the audience i.e. Nodular Prurigo UK. I have therefore decided to re-brand the organisation to Nodular Prurigo International. Now all we have to do is conquer the world!!

I have been thinking a lot about the posts on the NP-UK Facebook page and have a need to share some thoughts with you about the way in which Nodular Prurigo has not only changed my life, but significantly changes those of all I have come across over the past two years since I started the website and Facebook group.

When most lay people think about a disease process, they often believe that it is usually the physical aspect of it that effects peoples lives. With NP and other conditions that is not true. These conditions have a profound effect on the whole of the lives of those who suffer from them. Oh that the treatment of NP was as simple as that for a broken leg or an uncomplicated  stomach ulcer! Have some treatment – wait a while and get on with your life again. Simples!!*

* For those who don’t watch British TV -

When I read on Facebook comments like:

• “ For me the worst thing is not being able to find a partner or be on a level playing field for finding one.“
• ” I don’t know anyone that I am in contact with, family/friends etc who know what it feels like to have NP. Although it might be a chicken and egg situation about what comes first NP or emotional illness, it is a terrible disease.“
• “..have gone into very weepy mode just think it’s combination of six years just comes over in waves and I burst in to tears so am trying to sort myself out as don’t want to go on to the anti depressants the doctor has prescribe.“

I am filled with sadness and some tears. What are we doing to help these people who are emotionally, psychologically and socially damaged, as well as having to deal with the physical aspects of NP? Not much, is what I would say.

I recognise that GP’s, dermatologists, nurses and others do their best in a difficult situation, but they almost always resort to the treatment of the physical effects and do little to help with the emotional, psychological and social needs of their patients; apart from psychotropic drugs. Without being too damming it comes across to me as,

“Pop in the pills, put on your creams, stop scratching and try not to take up too much of our time.”

I personally have come to the conclusion that the NP will go with me to the grave. I cannot see in the foreseeable future that there will be any physical or medical treatment which is going to ‘cure’ or at least give me some form of remission. But what I still need and what I demand is that medical and other professionals stop hiding away from the impact that this disease has across the span of people’s lives. Sure, person centered care costs, but don’t we deserve better? Is it that a ‘skin condition’ is not seen as important as cancer or HIV? This is just another example of the inequalities in health that blight our lives.

I asked my then consultant dermatologist a while back if he could name an expert in the field of NP, and he couldn’t. I expect that if I had asked about infantile eczema or skin cancer, he would have been able to point me to some centre of excellence. We are a Cinderella group who are expected to be grateful for the crumbs that drop from the table. Where is the research, or isn’t it sexy enough for the high-flyers?

Please don’t think that I am acting out my victim mentality in this rant because I am not. I am grateful for all the help I have been given so far, limited though it has been, but as sufferers we cannot stand idly by. We have a responsibility to demand change. We need to promote our cause more actively. We need to mention what we talk about in our private world on Facebook publicly. This is not an issue that will be solved by silence.

So having thrown down the gauntlet, what would I like to expect of you as someone affected by NP, and I don’t just mean those who have it? Please think of any way that you can raise the profile of sufferers, be that writing to your MP, the Secretary of State for Health, local newspaper, radio or TV. Write to the British Association of Dermatologists and ask what is the profession doing about this?

For those of you living outside of the UK I pose the same question. Is this any sort of life to have and is there anything that you can do to get this message across and effect change? Whether this plea claims any results depends on you. Let me know what you think.