Lauren Amphlett – Page 5 – Aspergillosis Patients & Carers Support

Advice for patients on long-term steroid treatment

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Are you on long-term steroid treatment?

Patients who take long-term (greater than three weeks) oral, inhaled, or topical steroids for medical conditions, are at risk of developing secondary adrenal insufficiency (resulting in very low cortisol levels) and becoming steroid-dependent (to artificially replace cortisol).

The omission of steroids for these patients can result in an adrenal crisis as they no longer produce their own cortisol, which is a medical emergency that if left untreated can be fatal. For example, if a steroid-dependent patient had a road accident and was admitted to A&E without medical staff knowing that they needed daily steroid medication (such as if they were unconscious or otherwise unable to communicate) then they would be at high risk of adrenal crisis.
NOTE: it is often desirable for a patient to reduce their dose of oral steroids in order to minimise adverse effects and symptoms. If this is achieved the steroid-dependent patient can be switched to a form of oral steroid that should be less prone to adverse effects (i.e. hydrocortisone) in order to prevent them from going into adrenal crisis.

Cortisol is also part of your body's system to cope with stress. Consequently, if you are steroid-dependent on e.g. hydrocortisone you will need an increased dose if your stress levels increase - this can be caused by many things including infection, becoming acutely ill, suffering trauma, or undergoing surgery for example.

To ensure clinical staff are always aware of the risk of adrenal crisis, consequently the new national guidance was issued in August 2020 which promotes a new patient-held Steroid Emergency Card to help healthcare workers identify patients with adrenal insufficiency and provide information on emergency treatment if the patient presents in an emergency. The card also provides details of the prescriber, drug, dosage, and duration of treatment.

Where can patients get a steroid card?

Cards can be obtained from GPs, hospital teams and community pharmacies. More information can be found here.

The card can also be downloaded as a PDF, and added as a lock screen to mobile devices. Learn more from the Addison’s Disease Self-Help Group.

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by Lauren Amphlett

Vaccine Types

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Vaccines. Something most, if not all of us, are familiar with. MMR (Measles, Mumps & Rubella), TB (Tuberculosis), Smallpox, Chicken Pox, and the more recent HPV (Human Papillomavirus) and Covid-19 vaccines are just a few of the many available to protect us from harmful pathogens (an organism that causes disease like bacteria or viruses – aka 'germs'). But what exactly is a vaccine, and how does it protect us?

Firstly, to understand vaccines, it helps to have a fundamental understanding of the immune system. The immune system is the body's natural defence against harmful pathogens. It is a complex system of organs and cells that work together to help fight off infection caused by invading pathogens. When a 'germ' enters our body, the immune system triggers a series of responses to identify and destroy it.

Outward signs we are having an immune response are:

A raised temperature (fever) and uncontrollable shivering (Rigors).
Inflammation; this can be internal or visible on the skin's surface – for example, from a cut.
Coughing & Sneezing (mucus traps germs, which are then removed by the action of coughing or sneezing).

Types of immunity:

Innate (also called nonspecific or natural) immunity: We are born with a combination of physical (skin and mucous membranes in the respiratory and gastrointestinal tracts), chemical (for example, stomach acid, mucous, saliva and tears contain enzymes that breakdown the cell wall of many bacteria¹), and cellular (natural killer cells, macrophages, eosinophils are just a few²) defences against pathogens. Innate immunity is a type of general protection designed to immediately respond to the presence of a pathogen.

Adaptive immunity: The adaptive, or acquired, immune response is more specific to an invading pathogen and occurs after exposure to an antigen (a toxin or foreign substance which induces an immune response) either from a pathogen or vaccination.³

Below is an excellent video from TedEd that provides a simple yet detailed explanation of how the immune system works.

Types of vaccines

There are several different types of vaccines that use various mechanisms to 'teach' our immune systems how to fight off specific pathogens. These are:

Inactivated vaccines

Inactivated vaccines use a version of the pathogen that has been killed. These vaccines generally require several doses or boosters for immunity to be ongoing. Examples include Flu, Hepatitis A and Polio.

Live-attenuated vaccines

A live-attenuated vaccine uses a weakened live version of the pathogen, mimicking natural infection without causing serious disease. Examples include Measles, Mumps, Rubella, and Chickenpox.

Messenger RNA (mRNA) vaccines

An mRNA vaccine contains no actual part of the pathogen (alive or dead). This new type of vaccine works by teaching our cells how to make a protein that will in turn, trigger an immune response. In the context of Covid-19 (the only mRNA vaccine approved for use in the form of the Pfizer and Moderna vaccinations), the vaccine instructs our cells in making a protein found on the surface of the Covid-19 virus (the spike protein). This causes our bodies to create antibodies. After delivering the instructions, the mRNA is immediately broken down.⁴

Subunit, recombinant, polysaccharide, and conjugate vaccines

Subunit, recombinant, polysaccharide, and conjugate vaccines do not contain any whole bacteria or viruses. These vaccines use a piece from the pathogen's surface —like its protein, to elicit a focused immune response. Examples include Hib (Haemophilus influenzae type b), Hepatitis B, HPV (Human papillomavirus), Whooping cough (part of the DTaP combined vaccine), Pneumococcal and Meningococcal disease.⁵

Toxoid vaccines

Toxoid vaccines are used to protect against pathogens that cause the release of toxins. In these cases, it is the toxins that we need to be protected from. Toxoid vaccines use an inactivated (dead) version of the toxin produced by the pathogen to trigger an immune response. Examples include Tetanus and Diphtheria.⁶

Viral Vector

A viral vector vaccine uses a modified version of a different virus (the vector) to deliver information in the form of a genetic code from a pathogen to our cells. In the case of the AstraZeneca and Janssen/Johnson & Johnson vaccines and Covid-19, for example, this code teaches the body to make copies of the spike proteins – so if exposure to the actual virus occurs, the body will recognise it and know how to fight it off.⁷

The video below was developed by Typhoidland and The Vaccine Knowledge Project and describes what happens inside our cells when we are infected with a virus - using Covid-19 as the example.

References

Science Learning Hub. (2010). The body's first line of defence. Available: https://www.sciencelearn.org.nz/resources/177-the-body-s-first-line-of-defence Last accessed 18 Nov 2021.
Khan Academy. (Unknown). Innate Immunity. Available: https://www.khanacademy.org/test-prep/mcat/organ-systems/the-immune-system/a/innate-immunity Last accessed 18 Nov 2021.
Molnar, C., & Gair, J. (2015). Concepts of Biology – 1st Canadian Edition. BCcampus. Retrieved from https://opentextbc.ca/biology/
Mayo Clinic Staff. (Nov 2021). Different types of COVID-19 vaccines: How they work. Available: https://www.mayoclinic.org/diseases-conditions/coronavirus/in-depth/different-types-of-covid-19-vaccines/art-20506465 Last accessed 19 Nov 2021.
Office of Infectious Disease and HIV/AIDS Policy (OIDP). (2021). Vaccine Types. Available: https://www.hhs.gov/immunization/basics/types/index.html Last accessed 16 Nov 2021.
Vaccine Knowledge Project. (2021). Types of vaccine. Available: https://vk.ovg.ox.ac.uk/vk/types-of-vaccine Last accessed 17 Nov 2021.
CDC. (Oct 2021). Understanding Viral Vector COVID-19 Vaccines. Available: https://www.cdc.gov/coronavirus/2019-ncov/vaccines/different-vaccines/viralvector.html#:~:text=First%2C%20COVID%2D19%20viral%20vector,is%20called%20a%20spike%20protein Last accessed 19 Nov 2021.

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by Lauren Amphlett

Aspergillosis and the benefits of gentle exercise – a patient’s perspective

Cecilia Williams suffers from aspergillosis in the form of an aspergilloma and Chronic Pulmonary Aspergillosis (CPA). In this post, Cecilia talks about how a light but regular exercise regime has helped improve her health and wellbeing.

I downloaded the exercise guide (available here) in September this year. My oxygen levels had been dreadful, and I wanted to do some form of at-home pulmonary rehabilitation. I was surprised that the exercises in the programme were to be undertaken daily, as previous pulmonary programmes at the hospital were only three times a week. However, this programme was a lot simpler.

I do a stretching routine for a few minutes before the exercises, and I have now introduced 2.5kg weights, but I would do them without weights when I first started. I started at the lowest number of reps for the seated and standing exercises and have gradually increased to the recommended sets. I take my time to do the exercises as I can get breathless, and the time it takes depends on the kind of day I’m having. I break the 30-minute step into two; one first thing in the morning and one after lunch. If I go for a walk outside, I just do the other exercises and no step routine. I make a conscious effort to concentrate on my breathing as indicated on the chart. I use the breathing techniques recommended by Phil (National Aspergillosis Centre Specialist Physiotherapist, video available here), which has been my go-to for getting my breathing back to normal.

When I started this programme, my oxygen saturation levels were poor. I was breathless for long periods, and I would suffer all day with terrible nasal congestion and postnasal drip - I was forever steaming with menthol crystals. Incorporating the exercises and breathing techniques into my daily routine (first thing in the morning in my bedroom with the windows open) has had a profound effect. My congestion clears easier without steaming. I can take deeper breaths and hold my breath for longer. I have noticed the time it takes for me to recover from episodes of low oxygen levels and breathlessness has also improved. I do all the exercises on the table; the balance ones are essential, and with time and practice, I am improving - though I haven’t started doing them with my eyes closed – I am not there yet! I hope that writing my account of the benefits even the lightest of exercise programmes has gives others confidence and encouragement to undertake an at-home exercise programme.

If you want to know more about exercising with aspergillosis, our Specialist Physiotherapist Phil Langdon has a talk available via our YouTube channel here.
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by Lauren Amphlett

Antifungal Drug Pipeline

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Many of our patients already know of the increasing need for new antifungal drugs; treatments for fungal diseases like aspergillosis have significant limitations. Toxicities, drug-drug interactions, resistance, and dosing are all issues that can complicate therapy; therefore, the more treatment options we have, the more likely we are to find an optimal therapeutic option for patients.

Developing antifungal drugs is difficult because of the biological similarities between people and fungi; we share many of the same biological pathways as fungi, creating issues in developing safe antifungals. To develop new antifungal drugs, researchers must look at how they can exploit some of the differences we do have.

Below is a layman’s breakdown of a recently published review that looked at seven antifungal drugs currently in various stages of development. The majority of new antifungals have been new versions of old drugs, but the ones discussed in this review have new mechanisms of action and different dosing regimens, so, if approved, these drugs could provide a ray of hope in the not so distant future in terms of treatment.
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Rezafungin

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Rezafungin is currently in phase 3 of development. It is a member of the echinocandin class of drugs, including micafungin and caspofungin; Echinocandins work by inhibiting a fungal cell wall component essential to homeostasis.

Rezafungin has been developed to retain the safety benefits of its echinocandin predecessors; while enhancing its pharmacokinetic and pharmacodynamic properties to create a unique, longer-acting, more stable treatment that allows for weekly intravenous rather than daily administration, potentially expanding treatment options in the setting of echinocandin resistance.

Fosmanogepix

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Fosmanogepix is known as a first-in-class drug (so first of its kind antifungal) that blocks the production of an essential compound that is important for the construction of the cell wall and self-regulation. Blocking the production of this compound weakens the cell’s wall enough that the cell can no longer infect other cells or evade the immune system. It is currently in Phase 2 clinical trials and is showing promising results in the oral and intravenous treatment of multiple invasive fungal infections, demonstrating efficacy in multi-drug resistant and other difficult-to-treat infections.

Olorifim

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Olorifim falls under an entirely new class of antifungal drugs called orotomides. The orotomides have a distinct mechanism of action, selectively targeting a key enzyme in pyrimidine biosynthesis. Pyrimidine is an essential molecule in DNA, RNA, cell wall and phospholipid synthesis, cell regulation, and protein production, so when Olorofim targets this enzyme, it profoundly affects the fungi. Unfortunately, Olorifim isn’t broad spectrum, and it only kills a few fungi – pertinently, Aspergillus, and the fungus that causes valley fever (which affects the brain), Coccidioides. Since its discovery, it has progressed through pre-clinical studies and phase 1 human trials and is currently an ongoing phase 2 clinical trial testing its use orally and intravenously.

Ibrexafungerp

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Ibrexafungerp is the first of a new class of antifungals called Triterpenoids. Ibrexafungerp targets the same essential component of the fungal cell wall that the echinocandins do, but it has an entirely different structure, making it stabler and meaning it can be given orally; differentiating Ibrexafungerp from the three currently available echinocandins (caspofungin, micafungin, andulafungin), which can only be given intravenously limiting their use to hospitalised patients and those with indwelling venous access.

There are two ongoing phase 3 trials of ibrexafungerp. The most extensive enrolling study to date is the FURI study, which evaluates the efficacy and safety of Ibrexafungerp among patients with severe fungal infection and who are unresponsive or intolerant of standard antifungal agents. The oral formulation was recently approved by the USA’s Food and Drug Administration (FDA) for the treatment of vulvovaginal candidiasis (VVC).

Oteseconazole

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Oteseconazole is the first of several tetrazole agents designed with the goal of greater selectivity, fewer side effects, and improved efficacy compared to currently available azoles. Oteseconazole has been designed to tightly bind to an enzyme called cytochrome P450. When we discussed earlier fungi and humans being similar, cytochrome P450 is one of those similarities. Human cells contain various species of cytochrome P450, which are responsible for many important metabolic functions. Therefore, if azole antifungal agents inhibit the human cytochrome P450, the result can be adverse reactions. But, unlike other azole antifungals, Oteseconazole only inhibits the fungal cytochrome p450- not the human one because of its affinity for the target enzyme (cytochrome P450) is greater. This should mean fewer drug-drug interactions and less direct toxicity.

Oteseconazole is in phase 3 of development and is currently under FDA consideration for approval to treat recurrent vulvovaginal candidiasis.

Encochleated Amphotericin B

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Many of our patients will already be aware of Amphotericin B, which has been around since the 1950s. Amphotericin B falls under the class of drugs called Polyenes- the oldest class of antifungal drugs available. They kill fungi by binding to ergosterol which acts to maintain cell membrane integrity. The drug works by stripping away the ergosterol, causing holes in the cell membrane, making it leaky enough to fail. But, polyenes also interact with cholesterol in human cell membranes, meaning they have significant toxicities. Encochleated Amphotericin B has been developed to avoid these significant toxicities – its novel lipid nanocrystal design allows for drug delivery directly to the infected tissues, shielding the body from unnecessary exposure – and it can be given orally, potentially reducing hospital stays.

Encochleated Amphotericin B is currently in phases 1 & 2 of development, so a little way off. Still, it promises the potential of an oral drug with little, if any, of the typical toxicities of amphotericin B.

ATI-2307

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ATI-2307 is in the very early stages of development and is a new antifungal drug with a unique mechanism of action. ATI-2307 inhibits mitochondrial function (mitochondria are structures within cells that convert food to energy), decreasing the production of ATP (adenosine triphosphate), which is the molecule that carries energy, leading to growth inhibition.

As mentioned earlier, ATI-2307 is still in the early stages. Still, researchers have completed three Phase 1 clinical studies that demonstrated it was well tolerated in humans at anticipated therapeutic dose levels. Thus, the clinical role for ATI–2307 is unclear; however, its broad in vitro activity against a host of important fungal pathogens, including multi-drug resistant organisms, could translate into a critical role for this compound, especially for fungal infections due to drug-resistant organisms such as azole-resistant Aspergillus species.
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by Lauren Amphlett

World Sepsis Day 2021

What is Sepsis?

Our immune system usually works to fight any bacteria, viruses, or fungi, to prevent infection. If an infection does occur, our immune system tries to fight it, sometimes with the help of medication such as antibiotics.

Sepsis (sometimes called septicaemia or blood poisoning) is a life-threatening reaction to an infection. It happens when our immune systems overreact to infection, and it causes damage to the body's tissues and organs.

Sepsis Facts

1 in 5 deaths globally is associated with sepsis
It is a medical emergency
Between 47 and 50 million people a year are affected globally
It does not discriminate, while some people are at higher risk, anybody can get it
It is the most preventable cause of death worldwide

Sepsis Symptoms

These symptoms might indicate sepsis

Slurred speech or confusion
Extreme shivering or muscle pain/fever
Passing no urine all-day
Severe breathlessness
Mottled or discoloured skin
You feel so unwell, you think you might die

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by Lauren Amphlett

Aspergillosis and Depression: A Personal Reflection

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Alison Heckler is from New Zealand, and she has Allergic Bronchopulmonary Aspergillosis (ABPA). Below is Alison's personal account of her recent experiences with aspergillosis and the impact it has had on her mental health.

Physical and mental health go hand in hand. Opening up about the impact chronic conditions can have on mental health is important to remove the stigma and feelings of isolation. Here at the National Aspergillosis Centre, we provide a warm, no pressure virtual support group where you can chat with others, ask questions or just sit and listen. Details about our weekly meetings can be found here. If you cannot join our support group, we have also have a friendly Facebook group where you can ask questions, get advice and find signposts to helpful material.

Aspergillosis and Depression: A Personal Reflection

Now that I am not feeling quite so down, I thought it a good time to write about dealing with bouts of “the blues” that verge on depression.

I have really been struggling on and off for a week or two. The pleural pain from ABPA has become quite debilitating; the fatigue and exhaustion are frustrating. In addition, I suffer from waves of feeling hot, especially at night. At times, I become aware that my breathing has become shallow and rapid in an effort to bypass the discomfort of breathing (time to kick in good breathing techniques).

I have been back on Itraconazole for over 8 weeks, and I think I was hopeful that it would bring about improvements, but not as yet. I also only have one kidney and a ‘contorted urethra’ that causes urinary reflux, so pain /discomfort and issues in the plumbing department. I have osteoporosis from extended prednisone treatment and neuro pain in my feet and legs. I ache all over. I feel like I’m living on paracetamol, inhalers etc. None of which seem to make any difference. Doctors confirm that I have no wheeze.

First thing in the morning, my mouth is encased in dry foulness that then reconstitutes as a yellow-brown foam until the sinuses and upper bronchial tract have been cleared; then, it settles to a white or pale green foamy mucus. Getting the pain and the breathing back under control each morning seems like a huge mission that takes at least two hours for meds and gravity to kick (and maybe also a little coffee ritual) in.

Another patient recently reminded us about daily energy levels being visualised as 12 spoons for a day, and every little thing we do uses up a spoon of energy. Unfortunately, of late, my spoons have only been small teaspoon size!

None of the symptoms from all the above things listed, on their own, could be classified as major or significant; but they combine to make it feel like I have just got over a severe acute bout of pneumonia (but I haven’t actually been that sick). Past experience leads me to think that all can be well again with time, rest, and rebuilding fitness.

However, the reality is: What is caused by what condition and what is a side effect of medications is almost impossible to identify. So the whole mess is a complex balancing act for the medical team between the various conditions and possible side effects to get a reasonable quality of life.

I was pushing on, learning to accept that I have to physically rest more often but had a little sitting project I could do. “I can handle this,” I thought. Then a couple more things went wrong; I ripped another layer of skin off my “prednisone tissue paper arms” that required medical dressings, then NZ was plunged into a Level 4 Lockdown because of COVID Delta variant breaking out in the community. So a planned camping trip to celebrate my friend's 50th Wedding Anniversary and return to my beach home to work on projects and collect belongings I hadn’t yet moved to the unit all got cancelled, and I was confined to quarters. Suddenly I was overwhelmed with despondency.

I dealt with Depression many years ago, and also, as a Grief Recovery Facilitator, I have the knowledge and the tools to help myself through this. But it came in waves, and the energy to fight was not available. So it can be a very scary place to find oneself.

Depression is not rational (I have a great deal to be thankful for and conditions in New Zealand are far from difficult). As I was thinking through why I was struggling to throw off the despondency, I realised that to a degree; I had not yet fully grasped the extent of how aspergillosis affects my life. I had had some periods of feeling pretty good compared to how sick I had been when first diagnosed, and flares had been relatively short since then. This time not so much. A bit like when first working through a bereavement loss, you think you have grieved and come to terms with the loss. A bit of denial of the impact, maybe. Then suddenly, it hits... Aspergillosis is Chronic. It will not be recovered from. There will continue to be readjustments in lifestyle needed.

These realities do not need to send me into depression. Recognising and acknowledging the realities can then empower me to see the bigger picture. It can be managed (to a degree). Others have overcome greater issues than mine. There are things that I can work on that will help. My struggle can be an encouragement to someone else. Talking with others and writing all help.

More importantly, for me, as a follower of Jesus Christ, I firmly believe in the sovereignty of God and in the midst of any trial or difficulties I may be having in this world, He has a greater plan for my good, to draw me into a closer relationship with the Trinity of God the Father, Son & Holy Spirit, preparing me for eternity with Him. The trials that I face are instrumental in that process. I am currently rereading a very good book, “The Pressures Off” by Larry Crabb, which is helping with my thinking on this.

If you want to read more about how you can support your mental wellbeing, Every Mind Matters has some top tips available here.
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by Lauren Amphlett

Aspergillosis Patient & Carer Support

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Here at the National Aspergillosis Centre, we understand the importance of providing support and pride ourselves on bringing those affected by aspergillosis together.

Through our social media channels, our virtual weekly support group and monthly patient meetings, we provide accessible platforms where people can ask questions, share their experiences of life with aspergillosis, and express their emotions and frustrations - with people who understand first-hand. Our members regularly share anecdotal advice and are an endless source of support and encouragement. The NAC team are always on hand to provide information, signpost to resources, and at each monthly meeting, we present on topics relevant to aspergillosis.

We have a weekly zoom support group that meets every Tuesday at 2pm, Thursday at 10am and a more formal monthly meeting on the first Friday of every month 1-3pm. Everyone is welcome. The meetings are closed captioned, and you don't have to be a NAC patient - in fact, you don't even need to be in the UK - we welcome people from all over the world!

Alison Heckler is from New Zealand, and she has Allergic Bronchopulmonary Aspergillosis (ABPA). Alison was kind enough to tell us why, most weeks, she stays up way past her bedtime to join our weekly support meeting.

I joined the Aspergillosis Support Group when I was first diagnosed with aspergillosis. I was given zero information, so I was looking for a credible source of information. I was somewhat ill at the time, and one group member assured me that once my medication levels were right, I would get some level of life back.

Everyone was so encouraging while still being realistic and honest about the complexities of the condition.

Graham and others from the NAC team could answer questions from a knowledgeable, professional perspective, plus provide information on new research and developments.

I don’t know anyone in NZ who has Aspergillosis, so it’s nice to have a group of friends who will pick up on where I am at (health-wise), who don’t need explanations and have encouraging things to say. They care from a position of relating and understanding that “looking well” doesn’t necessarily mean that I am.

It also helps, when I’m feeling particularly frustrated, to recognise that others are dealing with even more issues and puts things back in perspective.

Because the group is essentially British, the discussion often focuses on the NHS, but even that helps keep me in perspective. There is information to be gleaned. NZ has a similar Public Health System, and my current medical team seems to understand ABPA. For all its faults, I am very appreciative of what we have, especially when I have some understanding of systems in other countries.

I like the virtual meetings on Zoom because I am communicating with real people; it is not just an anonymous written feed. We can joke and laugh together and share a little bit of our lives. The slightly more directed conversations, often prompted by someone’s question, are informative and useful. This then compliments the valuable articles posted on the support pages and website.

For more details and information on how to join our meetings, follow the link below:

https://aspergillosis.org/support/6226-2/

You can find us on Social Media:

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by Lauren Amphlett

Sunflowers, self-advocacy and the cancer diagnosis that wasn't: Marie's aspergillosis story

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In this podcast by My Rare Disease, Katy, the series founder, talks to Marie about her aspergillosis journey.

Marie talks openly about dealing with the diagnostic odyssey, the emotional impact, the need for self-advocacy and trusting your gut instinct, and how she believes it all began with a sunflower.

When asked to sum up aspergillosis, Marie uses three powerful words that will strike a chord with so many patients with aspergillosis:

Elusive
Dramatic
Permanent

It is an insight into the uncertain journey many aspergillosis patients have to endure before they reach a diagnosis, and you can listen to the episode below or via the link here.

You can listen to more of Katy's podcast interviews by visiting https://www.listennotes.com/podcasts/my-rare-disease-katy-baker-thapc81FBOw/

If you want to know more about aspergillosis visit our information page here.

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by Lauren Amphlett

How to exercise with aspergillosis

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Recording from 29 April 2021, when our specialist physiotherapist Phil Langridge gave a talk to our aspergillosis patient and carers support group on exercise.

-----Contents of video----

00:00 Intro
04:38 Exercise, physical activity and fitness
06:59 Why should we exercise
09:51 Why don't we exercise
18:14 Goals
29:37 Success measures
32:09 Where to access help
37:03 Progressing exercise
44:21 Pain and exercise
47:33 Resources
48:16 Q&A

Further resources:

https://www.blf.org.uk/support-for-you - a plethora of useful information
https://www.asthmaandlung.org.uk/living-with/keeping-active/pulmonary-rehabilitation – great information about pulmonary rehabilitation
see https://www.bhf.org.uk/informationsupport/support/practical-support/cardiac-rehabilitation for cardiac rehabilitation
https://weareundefeatable.co.uk/our-stories/ian - one patient with COPD shares his story regarding exercise
https://weareundefeatable.co.uk/our-stories/krisina - a patient with asthma shares her story
https://www.nhs.uk/live-well/exercise/ - some more background on exercise benefits and some ideas for options
https://www.uhb.nhs.uk/Downloads/pdf/PiOtagoStrengthBalance.pdf - an evidence-based exercise programme shown to reduce the risk of falls.
https://www.nhs.uk/live-well/exercise/gym-free-workouts/ - some examples of exercises
https://www.blf.org.uk/support-for-you/keep-active/exercise-video – more examples of exercises
https://blogs.bmj.com/bjsm/2020/12/18/return-to-exercise-helping-patients-to-overcome-the-long-tail-of-covid-19/ Returning to exercise with long covid in non-athletes
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4620334/ - a case presentation of Exercise-Induced Pulmonary Haemorrhage/oedema, discusses possible pathophysiology
https://www.diabetes.org.uk/guide-to-diabetes/managing-your-diabetes/exercise/blood-sugar-levels - managing exercise and diabetes

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by Lauren Amphlett

How to manage breathlessness

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Recording from 15 April 2021, when our specialist physiotherapist Phil Langridge gave a talk to our aspergillosis patient and carers support group on breathlessness.

-----Contents of video----

00:00 Intro
01:05 Meaning of breathlessness
03:19 When to seek help (Safety net)
04:09 Causes of breahlessness
06:53 Things that can be done to help with breathlessness
17:19 Techniques to help with breathlessness - Mechanics
21:44 Techniques to help with breathlessness - Positions for recovery
24:09 Techniques to help with breathlessness - Timing
29:27 Techniques to help with breathlessness - Worry
32:09 Techniques to help with breathlessness - Other
41:04 Take home points
43:16 Q&A

You can read more about managing breathlessness here.

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by Lauren Amphlett