Pain Awareness Month – USA

September is Pain Awareness Month in the USA, a month dedicated to raising awareness of the issues surrounding pain and pain management. Chronic pain can be a major problem for aspergillosis patients (though speak to your doctor if the pain is extreme or worsening), and can interfere with you living a full and active life. Often it is difficult to explain hidden symptoms such as pain to doctors, friends and family, which can be frustrating and a barrier to accessing the care you need. The American Chronic Pain Association have therefore put together several resources for both patients and their healthcare professionals, in order to ensure that anyone living with chronic pain can access support for managing and living with pain.

Resources:

For information and support in the UK:

“Aspergillus and me” by Los Trensplantados

“Aspergillus and me” is a song written by Alessandro Pasqualotto, a medical mycologist from Brazil, and two transplant patients, Jimi Joe (kidney), and King Jim (liver). 

The initiative started when King was hospitalized due to a chronic cough. King is known for being asthmatic and he has some mild bronchiectasis, in addition to being a liver transplant recipient. A bronchoalveolar lavage (BAL) was performed, and Pseudomonas aeruginosa was recovered in culture, in addition to Aspergillus fumigatus (galactomannan testing was not performed). At that time, Alessandro Pasqualotto visited King in the hospital primarily as a fan, not as a physician. After collecting several autographs in vinyl albums from the 80’s (King was part of the famous rock band Garotos da Rua), Pasqualotto and King started a discussion on the relevance of A. fumigatus in his BAL exam. Despite being treated with voriconazole by order of the medical team in charge, Pasqualotto thought the musician was only colonized by the fungus. The dilemma surrounding the relevance of Aspergillus in this context motivated both Pasqualotto and King to write a song about that.

After being discharged from the hospital, King collected a group of experienced musicians to record Pasqualotto’s song. This included Jimi Joe, a kidney transplant recipient who together with King formed the band “Los Tresplantados”, a group of three transplant musicians that approaches the importance of organ donation, as well as opportunistic infections. Los Tresplantados, however, have never written a song about fungal infections, so this was a great opportunity to increase people’s awareness of such important diseases.

So this is what “Aspergillus and me” are all about. Alternatively, musicians also refer to this song as “When Black Sabbath meets Neil Young”. We hope you enjoy the song!

Contacts: Alessandro C. Pasqualotto (acpasqualotto@gmail.com)

WhatsUp number: +55 51 999951614

You tube link: https://www.youtube.com/watch?v=5ar1na385zQ

Interview link (Portuguese only): https://www.youtube.com/watch?v=ZyywH0LtS50

Sunflower lanyards: support for travelling with invisible illnesses

Travelling through airports with an invisible illness can be difficult, as it may not be obvious to others that you need extra time or assistance. The experience can be stressful and anxious for some, and it may be hard to explain your hidden symptoms. This is why several airports in the UK have implemented a scheme, so that those with invisible illnesses can order a sunflower lanyard to wear through the airport. These lanyards make the wearer more visible so that they can travel independently, but access help quickly if needed. Some supermarkets are also trialing this scheme.

To find out more about sunflower lanyards, click here

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