Dysautonomia Awareness Month October 2023

mango · Oct 2, 2023

Dysautonomia International: Dysautonomia Awareness Month October 2023
http://www.dysautonomiainternational.org/page.php?ID=244

PoTS UK: PoTS Awareness Day 25th October
https://www.potsuk.org/about-us/pots-awareness-day-25th-october/

mango · Oct 2, 2023

DysautonomiSverige (dysautonomia Sweden) shares a series of personal stories on their Instagram account. Here's the first one:

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#DysautonomiSverige

mango · Oct 25, 2023

Today, 25th October, the famous indoor arena Scandinavium in Gothenburg, Sweden, will be lit up in turquoise lights for Dysautonomia Awareness Day. Pretty amazing, I think
Code:
https://www.facebook.com/gotevent/posts/pfbid0E17vmCMbywCoJ9XX5Pm2Dt4rfd9tuU86ALHVkFHD7c4Kkyeuzg89GauWKBUSbrFCl

mango · Oct 26, 2023

Great article (in the sports pages)

Manifestation på Scandinavium – för sjukdomen POTS
https://www.gp.se/sport/manifestation-på-scandinavium-för-sjukdomen-pots-1.113650493

Auto-translate said:

Manifestation at Scandinavium - for the disease POTS

Millions of people suffer from it, but few people know what it is. On Wednesday evening, Scandinavium will light up in the colour turquoise - to draw attention to the hard-to-diagnose disease POTS.

[...]Being affected by POTS means that the autonomic nervous system is not working properly. This can lead to symptoms such as: dizziness, nausea, chest pain, fatigue, sleep problems and problems with blood circulation.

- A very clear symptom is that you have trouble standing up, you have problems with the blood not being able to circulate up to the brain and heart," says Jenny Hendel.

Frölunda player has POTS

Former Frölunda fullback Lukas Bengtsson was diagnosed with the disease a few years ago. In an interview with GP, he described how he underwent over 100 blood tests and several courses of antibiotics before the diagnosis was confirmed. To this day, he still has clear symptoms.

- "Some mornings are not the most fun. I am very tired and nauseous. Then you just have to take care of your body," he said at the time. [...]

- It is a very unknown disease and this is because there is not enough knowledge, which makes it difficult to get the right diagnosis and treatment.

- This, in turn, can create problems in the form of not receiving any sickness benefit from the social security office because they do not understand why you are ill, or problems with the employer who may find it difficult to be understanding," she says.

POTS affects all individuals differently. While Lukas Bengtsson manages to play ice hockey in the Swiss top league, it can be harder for others to function in everyday life.

- "I have had to fight quite hard to be as functional as I am today. I have symptoms every day. I can't live my life as I did before I became ill. I can't work as much as I would like and I have fatigue that limits me in everyday life," says Jenny.
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mango · Oct 28, 2023

A lovely article in a Swedish local newspaper, published in September.

Hunden Azlan ska varna Ally – innan hon svimmar
https://www.svt.se/nyheter/lokalt/gavleborg/hunden-azlan-ska-varna-ally-innan-hon-svimmar--078h6f

Auto-translate said:

Azlan the dog will warn Ally - before she faints

17-year-old Ally Lundberg from Gävle lives with H-EDS and POTS syndrome. Diseases that cause pain, fatigue and a drop in blood pressure. Now she has chosen to train her own service dog.

Azlan, a black Labrador, is only 17 weeks old but already knows several commands and tricks. The plan is for him to help his mum Ally in her daily life.

- "He will be able to tell me when my heart rate is too high, before I pass out. He will help me with normal everyday things," says Ally Lundberg.

Azlan is only at the beginning of his training, but when he is ready, he will be able to detect changes in smell when Ally's pulse increases.

- "I will train him by taking odour samples when I have a high pulse," says Ally Lundberg.

Ally explains that she takes odour samples by rubbing a swab behind her knee when her heart rate increases. She saves it and can teach Azlan to react to the odour.

- "Dogs have an incredible sense of smell," Ally says.

H-EDS and POTS syndrome

When Ally was young, she was diagnosed with H-EDS, a disease that affects joints and skin, among other things - because of this, Ally has an overly mobile body where pain and stiffness are commonplace.

- "On my bad days I'm almost paralysed, I can't talk," says Ally.

Many H-EDS sufferers also have POTS syndrome, a nervous system disorder that causes sudden drops in blood pressure and can result in fainting when standing up.

Listen to Ally Lundberg in the clip about how she will train Azlan.
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Dysautonomia Awareness Month October 2023

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Dysautonomia Awareness Month October 2023

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