How do I report drug side effects?
[et_pb_section fb_built="1" admin_label="section" _builder_version="4.16" global_colors_info="{}" theme_builder_area="post_content" custom_padding="4px||4px||true|false"][et_pb_row admin_label="row" _builder_version="4.16" background_size="initial" background_position="top_left" background_repeat="repeat" global_colors_info="{}" theme_builder_area="post_content"][et_pb_column type="4_4" _builder_version="4.16" custom_padding="|||" global_colors_info="{}" custom_padding__hover="|||" theme_builder_area="post_content"][et_pb_text admin_label="Text" _builder_version="4.16" background_size="initial" background_position="top_left" background_repeat="repeat" global_colors_info="{}" theme_builder_area="post_content"]
Many of the drugs that aspergillosis patients take can cause side effects. Most of these will be well reported, but some may not have been identified. Here’s what to do if you are experiencing side effects.
First tell your doctor, in case you need to stop taking the medication, or so they can help you manage the side effects.
Also if you think it is a new or unreported side effect please let Graham Atherton (graham.atherton@manchester.ac.uk) at the NAC know, so that we can keep a record.
UK: In the UK, the MHRA have a Yellow Card scheme where you can report side effects and adverse incident of medications, vaccines, complementary therapies and medical devices. There is an easy online form to fill in – you do not need to do this via your doctor. If you need help with the form, reach out to someone at NAC or ask someone in the Facebook support group.
US: In the US, you can report side effects directly to the FDA via their MedWatch scheme.
[/et_pb_text][/et_pb_column][/et_pb_row][/et_pb_section]
How do I make the council fix my damp home?
[et_pb_section fb_built="1" admin_label="section" _builder_version="4.16" global_colors_info="{}" theme_builder_area="post_content"][et_pb_row admin_label="row" _builder_version="4.16" background_size="initial" background_position="top_left" background_repeat="repeat" global_colors_info="{}" theme_builder_area="post_content"][et_pb_column type="4_4" _builder_version="4.16" custom_padding="|||" global_colors_info="{}" custom_padding__hover="|||" theme_builder_area="post_content"][et_pb_text admin_label="Text" _builder_version="4.16" background_size="initial" background_position="top_left" background_repeat="repeat" global_colors_info="{}" theme_builder_area="post_content"]
Damp and mouldy homes are a serious health risk for everybody, and can present significant risks to those already suffering from conditions such as aspergillosis. Here are some tips for asking your council, or housing association, to fix your damp home.
Where is the damp? : Common places that Aspergillus may be found in the home include: damp walls, wallpaper, leather, filters and fans, humidifier water, potted plant soil and decomposing wood. It is often found in living rooms, kitchens and bathrooms. Use our guide to finding the source of the damp.
Try to find the underlying repair issue that is the source of the damp problem as it will give you more leverage if you can prove that you are not responsible for the problem. Be wary if you are getting close to the mould, or trying to clean it - you should wear a face mask.
What to do? : Submit a formal request ASAP for the repair via the normal channel for your council or housing association.
They might claim that you are responsible for the damp, and in the UK that is often partially true as some tenants refused to adequately ventilate their homes in winter. However there are usually measures that the landlord can take too. If this is the case, a compromise needs to be reached and in the UK there is a housing ombudsman service who can mediate these disputes
If you are still sure that the damp is your landlord's responsibility, ask Environmental Health (in writing) to do an HHSRS assessment. In your letter mention that mould is a category 1 hazard, and give specific examples of how it is affecting the health of your family (and visitors, if relevant).
In some circumstances a report from an independent buildings surveyor may be useful.
Look into whether the Right to Repair scheme applies to you
Further information can be found at:
[/et_pb_text][/et_pb_column][/et_pb_row][/et_pb_section]
How do I make my private landlord fix my damp home?
[et_pb_section fb_built="1" admin_label="section" _builder_version="4.16" custom_padding="5px||5px||true|false" global_colors_info="{}" theme_builder_area="post_content"][et_pb_row admin_label="row" _builder_version="4.16" background_size="initial" background_position="top_left" background_repeat="repeat" global_colors_info="{}" theme_builder_area="post_content"][et_pb_column type="4_4" _builder_version="4.16" custom_padding="|||" global_colors_info="{}" custom_padding__hover="|||" theme_builder_area="post_content"][et_pb_text admin_label="Text" _builder_version="4.16" background_size="initial" background_position="top_left" background_repeat="repeat" global_colors_info="{}" theme_builder_area="post_content"]
Damp and mouldy homes are a significant health risk for everybody, and can present serious risks to those already suffering from conditions such as aspergillosis. It can sometimes be tricky getting your landlord to sort out problems in your home, so we've compiled some tips for asking your landlord to fix the damp.
Where is it?: Common places that Aspergillus may be found in the home include: damp walls, wallpaper, leather, filters and fans, humidifier water, potted plant soil and decomposing wood. It is often found in living rooms and bathrooms.
Try to find the underlying repair issue that is the source of the damp problem as it will give you more leverage if you can prove that the damp problem is not caused by you. Be wary if you are getting close to investigate the mould or trying to clean it - you should take precautions, such as wearing a face mask.
What to do/know: Read your tenancy agreement to try and work out whether your landlord is responsible for repairing the problem. Citizen’s advice has more information on damp and landlord responsibilities.
In some cases, a private landlord may decide to evict a tenant rather than do repair work. Make sure you know whether you're at risk of eviction before taking action.
They might claim that you are responsible for the damp, and in the UK that is often partially true as some tenants refused to adequately ventilate their homes in winter. However there are usually measures that the landlord can take too. If this is the case, a compromise needs to be reached and in the UK there is a housing ombudsman service who can mediate these disputes
If you cannot reach an agreement, or you are still sure that the damp is not your responsibility, ask Environmental Health (in writing) to do an HHSRS assessment. In your letter mention that mould is a category 1 hazard, and give specific examples of how it is affecting the health of your family (and visitors, if relevant).
In some circumstances a report from an independent buildings surveyor may be useful.
Last resort: As a last resort, you could take court action. If you are considering court action it's not enough just to show that your home is damp. You'll have to show that the damp is there because either your landlord hasn't met their repair responsibilities, or a damp problem has caused damage to your home which your landlord is responsible for repairing.
Further information can be found at:
[/et_pb_text][/et_pb_column][/et_pb_row][/et_pb_section]
How do try a new diet?
[et_pb_section fb_built="1" theme_builder_area="post_content" _builder_version="4.19.1" _module_preset="default"][et_pb_row _builder_version="4.19.1" _module_preset="default" theme_builder_area="post_content"][et_pb_column _builder_version="4.19.1" _module_preset="default" type="4_4" theme_builder_area="post_content"][et_pb_text _builder_version="4.19.1" _module_preset="default" theme_builder_area="post_content" hover_enabled="0" sticky_enabled="0"]
There is a lot of discussion among aspergillosis patients about the best diet and eating practices to follow in order to stay as healthy as possible. Here are our tips and advice:
Eating healthily: When aspergillosis is front of mind, it’s easy to forget about other aspects of our health. A healthy diet is particularly important for people with aspergillosis – it helps your body to deal with the stress of aspergillus infection, keeps your immune system in tip-top shape and contributes to an overall feeling of wellness.
If you are planning on changing your eating habits, the most important thing to remember is to make sure you have a healthy, well-balanced diet:
- Base meals on starchy and wholegrain carbohydrates (e.g. potatoes, brown rice, wholegrain bread, brown pasta, rolled oats or wholegrain cereal)
- Eat lean proteins, like chicken, pulses, nuts, seeds, eggs and fish (oily fish like salmon, mackerel or fresh tuna is best)
- Eat at least five portions of fruit and veg a day
- Have some dairy or dairy alternatives, like cheese, milk, natural yoghurt and soy milk
- Choose unsaturated oils and spreads (e.g. vegetable oil and margarine)
Avoiding certain foods: There is a lot of information on the internet about foods to avoid in order to ‘starve’ the fungus. We also regularly get people telling us about improvements made to their quality of life after avoiding certain foods – often those containing fungi (e.g. mushrooms, cheese, brewed drinks, bread, soy sauce, miso and many more). Some people are sure that dairy makes their lungs feel worse. However, others do not notice any effects from these foods, and there is no known benefit to minimising your diet with respect to limiting a mould infection. Most of this information is confused with attempting to limit the growth of yeast fungi in our gut and not aspergillosis in our lungs.
Any food allergy can cause wheeziness, either immediately or up to 48 hours after eating. This is NOT a sign that you are ‘feeding the fungus’ – it’s a common allergic reaction mediated by histamine. Common culprits include dairy, nuts/seeds, wheat, food additives (sulphites/tartrazine), alcohol and sugar. It is extremely important that you avoid trigger foods and keep your asthma well managed, to avoid serious asthma attacks. More information at asthma.org.uk.
If you find that certain foods seem to make you feel wheezy, it might be an idea to start a ‘trigger food diary’ to keep track of these foods so you can avoid them in the future.
Superfoods: In recent years there has been a lot of talk about superfoods; foods that are supposedly nutritionally dense and provide health benefits. There is no official definition of a “superfood” and the EU has banned health claims on packaging unless supported by scientific evidence. No ‘superfood’ can compensate for general unhealthy eating habits; it is important to eat a well-balanced diet, as described above. However, there is scientific evidence for some foods having particular health benefits. This graphic provides useful information on the evidence for the health benefits of many superfoods. (This information is provided to us by the group who run the website at informationisbeautiful.net and we believe it is a fair representation of the literature available on May 2019. The Aspergillosis Website is not responsible for the information provided by this company).
[/et_pb_text][/et_pb_column][/et_pb_row][/et_pb_section]
How do I loosen and clear mucus?
[et_pb_section fb_built="1" admin_label="section" _builder_version="4.16" global_colors_info="{}" theme_builder_area="post_content"][et_pb_row admin_label="row" _builder_version="4.16" background_size="initial" background_position="top_left" background_repeat="repeat" custom_margin="6px|auto|6px|auto|true|false" global_colors_info="{}" theme_builder_area="post_content"][et_pb_column type="4_4" _builder_version="4.16" custom_padding="|||" global_colors_info="{}" custom_padding__hover="|||" theme_builder_area="post_content"][et_pb_text admin_label="Text" _builder_version="4.21.0" background_size="initial" background_position="top_left" background_repeat="repeat" hover_enabled="0" global_colors_info="{}" theme_builder_area="post_content" sticky_enabled="0"]
Mucus collecting in the airways is often a problem for aspergillosis patients. It can cause difficulties with breathing and even infections. Here are some tips and techniques to help you loosen and clear mucus.
Home remedies and devices:
Stay hydrated! Mucus is stickier and harder to clear if you're dehydrated - so make sure you drink enough water every day.
Pineapple juice contains bromelain - an enzyme which is mucolytic (breaks down mucus) - so drinking a glass may help with airway clearance. However, be aware that pineapple juice has a high sugar content and may also interact with some medications (antibiotics, blood thinners).
Fill a bowl with hot water (not too hot!), put a towel over your head and the bowl, and gently inhale the steam - this can help loosen mucus at the back of the nose and throat. A steam inhaler mug might be a more convenient alternative.
Oscillatory PEP devices, such as the 'Acapella' or the 'Flutter', are thought to help clear airways by shaking sputum loose and splinting your airways open as you breathe out. These may be available on prescription from your GP.
Nebulised hypertonic saline may be prescribed by your specialist. This works by thinning your phlegm and making it easier to clear with chest clearance exercises. Click here for more information on nebulisers.
Medication: Expectorants such as guaifenesin (in most over-the-counter cough syrups) work by increasing the volume of airway secretions, and making them less sticky so that they are easier to cough up.
If nothing else works, your doctor may be able to prescribe you a mucolytic called carbocysteine (called Mucodyne in the UK), which breaks down chemical bonds within the mucus to make it less viscous.
For more detailed information about clearing mucus, see this patient information leaflet written by NAC specialist physiotherapist, Phil Langridge:
When in a clinic you often need to produce sputum for testing. This video explains a technique that is widely used and is the standard technique at the National Aspergillosis Centre, Manchester, UK. It may be helpful at home too.
[/et_pb_text][et_pb_video src="https://www.youtube.com/watch?v=18z2M8CNyl4" _builder_version="4.19.4" _module_preset="default" global_colors_info="{}" theme_builder_area="post_content"][/et_pb_video][/et_pb_column][/et_pb_row][/et_pb_section]
Mindfulness for beginners
In recent years, mindfulness has emerged as a very popular practice to help fight stress and anxiety. Studies have shown that mindfulness can be effective in helping patients come to terms with chronic illness and, alongside traditional treatment options, allow patients to live productive lives.
