Category Archives: Self-help

Interactions – a new BUS Q & A page

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We are frequently asked about possible medicines interactions, particularly between prescribed immunosuppressants and complementary medicines such as dietary supplements or herbal remedies. The truth is that there is often no easy answer to many medicines interactions questions.

So, we decided to develop a new Q & A page to help you understand the subject of medicines interactions. We hope you will it find helpful, thought-provoking and enlightening.

The Q & As explain some of the complexities of medicines interactions. We hope that they will guide you in your searches and checking processes for the interactions information you need before you consider buying other medicines or supplements to add to the medication you are already taking.
Follow this link to browse the Q and A’s.

The Q & A content was created by one of our members. It has been reviewed by healthcare professionals and by members of the BUS standing advisory committee.

BUS would like to thank all those involved in preparing and checking this information.

April 2015

US Film Explores struggle of rare diseases

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Two US filmmakers have produced a documentary on Hermansky-Pudlak syndrome (HPS), a rare disease.  This film highlights the issues faced by all of us with rare diseases.

Like Birdshot, very few doctors have heard of HPS, and no-one knows how many people have it.  Getting diagnosed is difficult, and finding some-one else with the syndrome is difficult, so it is a lonely path people tread.  They also point out that there are no disease specific medications (just like for Birdshot). We Birdshotters at least have an organisation (BUS) that lets us connect with other Birdshotters!

The film points out that whilst each rare disease is uncommon, if you take all rare diseases together, they are very common.  It also explores the way that patients, once diagnosed, connect with others.  They highlight a similar development to BUS for each of the rare diseases, and how the internet has helped in this.

The most interesting part of this film follows a parent of a patient with HPS as she tries to find other patients to participate in a clinical trial to test a new drug.

It is a really moving film.  To see the full article go to:

http://www.sfgate.com/health/article/Film-explores-struggles-with-rare-diseases-3924112.php

Access To Medicines

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BUS was recently invited to participate in a debate on ‘How Can We Improve Earlier Access to Medicines for Patients in the UK?’  The debate was set up by Les Halpin, a very inspirational man who founded EMPOWER: Access To Medicine following his diagnosis of Motor Neurone Disease and realising that there were few medications licensed for this disease and that if research was undertaken on new medications, it would take many months or even years before  the medicine was available for use.

This debate was held at the King’s Fund in London and brought together a range of leading and influential individuals including:

▪   Lois Rogers, leading health journalist and contributor to publications including The Sunday Times, The Economist and New Statesman and consultant to the Department of Health and other government agencies

▪   Dr Richard Barker, Director of the Centre for Accelerating Medical Innovations, Oxford University and former head of the ABPI

▪   Yogi Amin, human rights and medical ethics lawyer, Irwin Mitchell

▪   Alastair Kent, Director of Genetic Alliance UK

▪   Professor Sir Peter Lachmann, Emeritus Sheila Joan Smith Professor of Immunology in the University of Cambridge and a fellow of Christ’s College

BUS has received a thank you letter for its input into the debate, which is copied below and gives information on how you can become involved in this campaign and how you can access the film of Les Halpin talking about the campaign:

Empower: Access to Medicine

I would like to personally thank you for attending the Empower: Access to Medicine debate at the King’s Fund last week. We appreciate your interest in and support for such an important subject.

I am very heartened by the response to this campaign. Whilst there are many separate discussions that are taking place on this issue, my main interest is in the voice of the patient which I believe has been least heard to date.

I am therefore delighted that patient advocacy groups from around the country have responded so positively. My key aim moving forward will be to support a unified patient voice so we can together deliver much needed change.

A longer and more comprehensive version of the film that was shown at the debate is now available online at www.accesstomedicine.co.uk and I would urge you to share this with colleagues and networks that may also be interested.

You can also join the conversation online through Twitter – find us on @empoweratm

The Empower team is now defining its campaign objectives as we continue to reach out to interested individuals and groups and we will keep you informed of our next steps.

In the meantime, if you have any questions or suggestions about the campaign, please contact Karen, James or Sarah at JBP on 0203 267 0074.

Yours sincerely,

Les Halpin

Founder, Empower: Access to Medicine

 

Documentary on Rare Diseases

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Two showings of RARE, a feature documentary that provides a closer look at the relationship between patients, advocacy groups and researchers involved in developing new treatments for rare diseases has just been aired in the US.

It is a really interesting documentary and highlights the importance of patient organisations like BUS being fully involved in the research process.  In fact, if you see the documentary, it is strangely reminiscent of the development of BUS!

If you want to see a short version of the documentary go to:

http://vimeo.com/46443548

If you want to read the article go to

http://scopeblog.stanford.edu/2012/09/07/stanford-filmakers-documentary-on-rare-diseases-to-air-next-week-on-kqed/

Why changing your diet could help control Birdshot Uveitis

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This is the first in a series of 3 posts about diet.   It is written by  BUS member  Nick Bucknall.  Nick is not a nutritionalist but he has taken a great interest in his own diet and and how it might possibly affect his eyes. The article is based on the information that he researched for the “Food and Supplements” stall that he and his wife Caroline ran at the 2nd Birdshot day last March.  Here he explains why he believes that changing your diet could help you control Birdshot.

“Birdshot is one of many inflammatory, auto-immune conditions. It is rare but seems to have much in common with more frequently encountered conditions such as rheumatoid arthritis, Crohn’s Disease, Lupus and Psoriasis – certainly the same drugs are widely used in treatment. It also seems good sense to find out what else besides these drugs has benefited people with these similar conditions – after all, there are literally millions of ‘them’ and only a few thousand of ‘us’.

Birdshot is also relatively new. As far as we know, we are the first generations to be affected, and it has only been observed in people living a modern lifestyle in the developed world. Nobody knows what triggers Birdshot but it is difficult not to wonder if a modern disease might not have a modern trigger?

Obviously, much research needs to be done but if we look to our fellow sufferers of auto-immune, inflammatory disease, the overwhelming advice seems to be that inflammatory conditions can be helped by close attention to diet.

I know a healthy lifestyle and diet are not a substitute for medical treatment but can greatly reduce our dependence on it. We all benefit from a healthy lifestyle – regular meals, exercise in the fresh air, a good night’s sleep and the avoidance of stress, etc.

“We are what we eat” is a cliché, but it is hard to dismiss when so many people have found relief from their symptoms by avoiding the known ‘inflammatory’ foods and seeking out the known ‘ anti-inflammatory’ foods. You could call this a ‘therapeutic’ diet, which is to say it’s a healthy diet with adjustments to reduce inflammatory elements. It isn’t difficult, it isn’t expensive. It may help and certainly won’t harm us. Worth a try? I thought so, and sincerely believe I have benefited.”

Nick’s second post which follows talks about how to make your diet less inflammatory.   the foods to avoid and  ones to eat lots of.

Nick’s third post is about supplements that might improve eye health

 

 

 

 

Meditation/Mindfulness – the health benefits

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“Forget the hippy dippy image.  Growing scientific research has shown that meditation can help with pain relief, lower blood pressure, regulate your immune system and even slow down the ageing process.  It is also a practical tool for dealing with stress, anxiety and depression.”

Some of our BUS members have told us that they experience depression (either because they have Birdshot or because of the side effects of medication), high blood pressure (either due to stress or as a side effects of medication) and pain in their joints and eyes (possibly a side effect of medication).   Many of our female members (including Rea and I) have complained about our ageing, dry and wrinkly skin (a side effect of medication).

Because of this, we thought it would be useful to introduce you to “Mindfulness”.  It is a simple practice which might just help you with some of the issues resulting from taking steroids, immunosuppressants, and concern about losing visual acuity.

Writer Tim Parks tells us more:-“In 2004 a form of meditation called mindfulness was recommended as a treatment for recurrent depression by the National Institute for Health and Clinical Excellence (NICE) and has been show to halve relapse rates.  Mindfulness uses a combination of meditation, breathing and yoga techniques helps people focus on the present moment and de-stress their thought processes. 

Meditation and mindfulness are the same thing,  you practice meditation to become more mindful.  American research has shown that people who meditate for 20 minutes a day had a higher pain threshold after just four days.  And scans have shown that regularly practicing mindfulness can shift activity from the pessimistic right side of our brain which is associated with fear, anxiety, and depression to the optimistic left side which is responsible for upbeat, positive emotions.”

Some of our members have told of the positive benefits they have received from meditation and mindfulness.   This may be something that could help you – AND, it does not involve taking toxic medication!

There is a four week course which is run on line by the Mental Health Foundation which costs £40 and a book which you can buy for just £5.00 The Mindful Manifesto by Dr Jonty Heaversede and Ed Haliwell which is a practical introduction and guide.”

You can read more about the experiences of Tim Parks is his book where he talks about how Mindfulness has changed his life  “Teach us to Sit Still”  – available from Amazon for just £5.00,  or you can even get started  for nothing by trying out this short Vipassana-based exercise which Tim Parks describes in detail below.

Don’t worry, Tim Parks says.  “You cant know what you’re aiming at until you get there, so don’t aim at anything.

  • Set an alarm for 10 minutes or however long you plan to sit
  • Sit in a position you can hold, hopefully with you back straight
  • There are no mantras, imaging or breathing techniques in this medication.
  • Close you eyes and mouth and feel your breath as it crosses your upper lip, entering and leaving your nose.
  • Maybe be you feel nothing.  Don’t be anxious – just bring your mind back every time it wanders off.
  • Don’t try to regulate your breathing.  Wait for it to come.  It will.

Once you can hang on to your breathing for a minute or two, (it might take a few sittings), use the concentration to go off and explore your body bit by bit.  The important thing is to keep the mind moving.  Painful or pleasurable, don’t linger over any one part of the body.

However futile this all sounds, follow the instructions faithfully and things will eventually begin to happen.  Above all, however long or short a time you’ve decided to sit for, accept that you are there for the duration.  Learning not to worry how much time is left is a great step forward.”

It is time I took some of my own advice, and gave myself an on-line mindfulness course for Christmas to see how it might help me.

If anyone has already tried Mindfulness, we would really like to hear your experiences.

Annie