Walk and paint yourself back to health & wellbeing
One of the subjects discussed at our online weekly patient & carer support meeting for the National Aspergillosis Centre in Manchester, UK this week was the importance of maintaining our health & wellness so that we may maintain our best possible quality of life regardless of having a chronic infection.
Exercise is difficult when you have little energy, and one or two participants compared this to being given just a few teaspoons of energy that have to be eeked out carefully over the course of the day to ensure that everything that needed to be done was done. One person commented that some days they only wake up with one teaspoon of energy!
A little gentle exercise every day could play a major role in maintaining your health & wellness and can help with energy too if you keep it up. Over time it will help you breathe and prevent muscle loss.
We can all get great advice from our GP's or Physiotherapists on specific exercises we can do in the home, but one patient mentioned that she had successfully worked their way back to fitness and enjoyment using the walking groups provided by the UK charity 'Walking for Health' who have a network of walking groups led by responsible trainers throughout the UK, specifically for people with asthma.
Well worth a try!
Another aspect of health & wellbeing is emotional health. It can be easy to become isolated and there is only so much entertainment to be found on TV. Another member of the support meeting suggested one of the many Zoom groups that have been set up to teach art!
There are many options online and many different media you can work with.
For example:
https://adult.art-k.co.uk/adult-zoom-classes/
https://www.artcoursework.com/class-courses/free-beginners-learn-to-draw-and-paint-course/
https://www.eventbrite.co.uk/d/online/free--arts--classes/?page=1
Good luck! Doing something is always better than doing nothing.
Antifungal Drug Pipeline
[et_pb_section fb_built="1" admin_label="section" _builder_version="4.19.1" width="100%" width_tablet="100%" width_phone="100%" width_last_edited="on|phone" global_colors_info="{}" theme_builder_area="post_content"][et_pb_row admin_label="row" _builder_version="4.19.1" background_size="initial" background_position="top_left" background_repeat="repeat" width_phone="114%" module_alignment="center" custom_margin="0px||0px||true|false" custom_padding="0px|0px|29px|0px|false|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 _builder_version="4.19.1" _module_preset="default" custom_margin="||27px|||" global_colors_info="{}" theme_builder_area="post_content"]
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.
[/et_pb_text][et_pb_text _builder_version="4.19.1" _module_preset="default" custom_margin="||15px|||" global_colors_info="{}" theme_builder_area="post_content"]
Rezafungin
[/et_pb_text][et_pb_image src="https://aspergillosis.org/wp-content/uploads/2022/12/rezafungin.png" title_text="rezafungin" _builder_version="4.19.1" _module_preset="default" custom_margin="||22px|||" global_colors_info="{}" theme_builder_area="post_content"][/et_pb_image][et_pb_text _builder_version="4.19.1" _module_preset="default" custom_padding="||0px|||" global_colors_info="{}" theme_builder_area="post_content"]
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
[/et_pb_text][et_pb_image src="https://aspergillosis.org/wp-content/uploads/2022/12/fosmanogepix.png" title_text="fosmanogepix" _builder_version="4.19.1" _module_preset="default" global_colors_info="{}" theme_builder_area="post_content"][/et_pb_image][et_pb_text _builder_version="4.19.1" _module_preset="default" global_colors_info="{}" theme_builder_area="post_content"]
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
[/et_pb_text][et_pb_image src="https://aspergillosis.org/wp-content/uploads/2022/12/olorifim.png" title_text="olorifim" _builder_version="4.19.1" _module_preset="default" global_colors_info="{}" theme_builder_area="post_content"][/et_pb_image][et_pb_text _builder_version="4.19.1" _module_preset="default" global_colors_info="{}" theme_builder_area="post_content"]
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
[/et_pb_text][et_pb_image src="https://aspergillosis.org/wp-content/uploads/2022/12/ibrexafungerp.png" title_text="ibrexafungerp" _builder_version="4.19.1" _module_preset="default" global_colors_info="{}" theme_builder_area="post_content"][/et_pb_image][et_pb_text _builder_version="4.19.1" _module_preset="default" global_colors_info="{}" theme_builder_area="post_content"]
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
[/et_pb_text][et_pb_image src="https://aspergillosis.org/wp-content/uploads/2022/12/oteseconazole.png" title_text="oteseconazole" _builder_version="4.19.1" _module_preset="default" global_colors_info="{}" theme_builder_area="post_content"][/et_pb_image][et_pb_text _builder_version="4.19.1" _module_preset="default" global_colors_info="{}" theme_builder_area="post_content"]
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
[/et_pb_text][et_pb_image src="https://aspergillosis.org/wp-content/uploads/2022/12/Encochleated-Amphotericin-B.png" title_text="Encochleated Amphotericin B" _builder_version="4.19.1" _module_preset="default" global_colors_info="{}" theme_builder_area="post_content"][/et_pb_image][et_pb_text _builder_version="4.19.1" _module_preset="default" global_colors_info="{}" theme_builder_area="post_content"]
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
[/et_pb_text][et_pb_image src="https://aspergillosis.org/wp-content/uploads/2022/12/ati2307.png" title_text="ati2307" _builder_version="4.19.1" _module_preset="default" global_colors_info="{}" theme_builder_area="post_content"][/et_pb_image][et_pb_text _builder_version="4.19.1" _module_preset="default" global_colors_info="{}" theme_builder_area="post_content"]
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.
[/et_pb_text][/et_pb_column][/et_pb_row][/et_pb_section]
World Sepsis Day 2021
[et_pb_section fb_built="1" admin_label="section" _builder_version="4.16" global_colors_info="{}" theme_builder_area="post_content" custom_padding="2px||2px||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"]
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
[/et_pb_text][/et_pb_column][/et_pb_row][/et_pb_section]
Aspergillosis and Depression: A Personal Reflection
[et_pb_section fb_built="1" admin_label="section" _builder_version="4.16" global_colors_info="{}" theme_builder_area="post_content" custom_padding="3px||3px||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="4.21.0" background_size="initial" background_position="top_left" background_repeat="repeat" hover_enabled="0" global_colors_info="{}" theme_builder_area="post_content" sticky_enabled="0"]
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.
[/et_pb_text][/et_pb_column][/et_pb_row][/et_pb_section]
Therapeutic drug monitoring (TDM)
[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" custom_margin="7px|auto|7px|auto|true|false"][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"]Therapeutic drug monitoring (TDM) is a branch of clinical chemistry and clinical pharmacology that specializes in the measurement of medication levels in blood. Its main focus is on drugs with a narrow therapeutic range, i.e. drugs that can easily be under- or overdosed.
When prescribing and managing oral antifungal medication, each needs to be carefully managed for each patient - the table below gives some standard guidelines as used at the UK National Aspergillosis Centre by its specialist pharmacists.
National Aspergillosis Centre (NAC) Patient & Carer Support meeting: July 2021
[et_pb_section admin_label="section"]
[et_pb_row admin_label="row"]
[et_pb_column type="4_4"][et_pb_text admin_label="Text"]Our support meetings are informal and designed to provide participants to chat, to ask questions and to listen to some expert opinions on a variety of subjects related to aspergillosis in some way - you can often ask questions too. No-one need go away without their questions having an answer from the NAC team.
This month we had a talk from University of Manchester & Manchester Fungal Infection group (MFIG) researcher Jorge Amich Elias on his research into new ways to treat aspergillosis - this one even has a medication ready to go!
We also had an informative talk on the important subject of Power of Attorney from NAC team member Lauren Amphlett.
See a collection of our meetings going back several years here[/et_pb_text][/et_pb_column]
[/et_pb_row]
[/et_pb_section]
Palliative Care - Not What You Might Think
[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" custom_margin="0px|auto|0px|auto|true|false"][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"]
Chronically ill people are occasionally asked to consider entering a period of receiving palliative care. Traditionally palliative care was equated with end of life care, so if you are offered palliative care it can be a daunting prospect and it is entirely natural to think that your healthcare workers are preparing you for the final stages of your illness. That is not the case.
End-of-life care usually revolves around making what time you have left as comfortable at possible. Increasingly palliative care does much more than that - the NHS information page on End-of-life care includes the following exerpt:
End of life care includes palliative care. If you have an illness that cannot be cured, palliative care makes you as comfortable as possible, by managing your pain and other distressing symptoms. It also involves psychological, social and spiritual support for you and your family or carers. This is called a holistic approach, because it deals with you as a "whole" person, not just your illness or symptoms.
Palliative care is not just for the end of life – you may receive palliative care earlier in your illness, while you are still receiving other therapies to treat your condition.
When we have spoken about palliative care to our patient groups here are some of the comments:
Palliative care can be very helpful. One individual I have worked with was very weak when we first met a few years ago after a very active life. He could barely speak. He was referred to a local palliative care team at a hospice where they were able to offer a variety of activities, holistic treatments and socialisation. He is now much better and a very chatty man, moving with a much better quality of life.
they introduce calm and certainty into a situation where neither are usually present.
I can’t recommend being referred to palliative care enough. Please don’t assume palliative care and end of life care is the same.
Palliative care is delivered by a range of medical professionals so you can make enquiries via your GP or hospital specialist. It can be delivered in a number of settings - in a couple of examples we heard about recently a local hospice provided support to achieve personal goals to live well - for the patient and their carer and family. It made a huge difference to the lives of the people concerned.
Hospice UK
[/et_pb_text][et_pb_video src="https://youtu.be/b42BZxdWWqQ" _builder_version="4.19.1" _module_preset="default" theme_builder_area="post_content" hover_enabled="0" sticky_enabled="0"][/et_pb_video][/et_pb_column][/et_pb_row][/et_pb_section]
Aspergillosis Patient & Carer Support
[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"]
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:
- National Aspergillosis Centre Facebook page
- National Aspergillosis Centre Support (Facebook)
- National Aspergillosis Centre Twitter feed
[/et_pb_text][/et_pb_column][/et_pb_row][/et_pb_section]
National Aspergillosis Centre (NAC) Patient & Carer Support meeting: June 2021
[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="9px|auto|50px|auto|false|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="4.16" background_size="initial" background_position="top_left" background_repeat="repeat" global_colors_info="{}" theme_builder_area="post_content"]
Our support meetings are informal and designed to provide participants to chat, to ask questions and to listen to some expert opinions on a variety of subjects related to aspergillosis in some way - you can often ask questions too. No one need go away without their questions having an answer from the NAC team.
This month we had a talk from National Aspergillosis Centre Team's Graham Atherton with an update on the COVID pandemic and its implications for aspergillosis patients in the UK, Beth Bradshaw of NAC talks about lung function tests and Chris Harris gives us our weekly exercises for 10 mins.
View full Video here
[/et_pb_text][/et_pb_column][/et_pb_row][/et_pb_section]
Sunflowers, self-advocacy and the cancer diagnosis that wasn't: Marie's aspergillosis story
[et_pb_section fb_built="1" admin_label="section" _builder_version="4.16" global_colors_info="{}" theme_builder_area="post_content" custom_padding="7px||7px||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"]
In this podcast by My Rare Disease, Katy, the series founder, talks to Marie about her aspergillosis journey.
- Elusive
- Dramatic
- Permanent
[/et_pb_text][/et_pb_column][/et_pb_row][/et_pb_section]