Maia’s fundraiser for POTS
Maia became ill with a virus in September 2017 but didn't get better. Over the next few months she developed a number of symptoms that left her extremely ill and she spent a lot of time in hospital and when she came home spent nearly all her time in bed.
Over the course of her first year living with the illness she was diagnosed with two conditions, firstly Postural Orthostatic Tachycardia Syndrome or POTS which makes Maia feel extremely dizzy when she stands up and causes frequent fainting. It also causes migraines, brain fog, gut & bladder problems, poor sleep, extreme fatigue and difficulties controlling blood pressure. Maia was also diagnosed with Ehlers Danlos Syndrome or EDS which is a genetic condition affecting the connective tissue throughout her body. EDS means that Maia has lots of pain in her joints and her joints are more likely to dislocate, it also affects her stomach making her feel nauseous all the time. Alongside this it causes many widespread and debilitating symptoms including bladder and digestive problems.
Maia has seen lots of doctors to treat her symptoms and the treatments are helping, however Maia still has lots of days where she is too ill to get out of bed. Her symptoms mean that she has been too unwell to go to school for 3.5 years and she has to use a wheelchair as she can only walk for very short distances.
Despite all these difficulties, Maia amazes those close to her with her naturally positive attitude and her impressive resilience.
Unfortunately awareness of POTS and EDS is poor, even amongst medical professionals, so diagnosis can take a long time. This can cause patients to go undiagnosed for years and suffer for longer or be misdiagnosed with incorrect treatment, which can be more damaging.
More information about PoTS UK: We aim to support and encourage individuals with PoTS. We hope to educate family, friends and medical professionals within the United Kingdom to this widely unknown and misdiagnosed condition by means of sharing up to date medical research and resources. PoTS UK desires to offer hope that life can be enjoyed while living with this health condition
Over the course of her first year living with the illness she was diagnosed with two conditions, firstly Postural Orthostatic Tachycardia Syndrome or POTS which makes Maia feel extremely dizzy when she stands up and causes frequent fainting. It also causes migraines, brain fog, gut & bladder problems, poor sleep, extreme fatigue and difficulties controlling blood pressure. Maia was also diagnosed with Ehlers Danlos Syndrome or EDS which is a genetic condition affecting the connective tissue throughout her body. EDS means that Maia has lots of pain in her joints and her joints are more likely to dislocate, it also affects her stomach making her feel nauseous all the time. Alongside this it causes many widespread and debilitating symptoms including bladder and digestive problems.
Maia has seen lots of doctors to treat her symptoms and the treatments are helping, however Maia still has lots of days where she is too ill to get out of bed. Her symptoms mean that she has been too unwell to go to school for 3.5 years and she has to use a wheelchair as she can only walk for very short distances.
Despite all these difficulties, Maia amazes those close to her with her naturally positive attitude and her impressive resilience.
Unfortunately awareness of POTS and EDS is poor, even amongst medical professionals, so diagnosis can take a long time. This can cause patients to go undiagnosed for years and suffer for longer or be misdiagnosed with incorrect treatment, which can be more damaging.
More information about PoTS UK: We aim to support and encourage individuals with PoTS. We hope to educate family, friends and medical professionals within the United Kingdom to this widely unknown and misdiagnosed condition by means of sharing up to date medical research and resources. PoTS UK desires to offer hope that life can be enjoyed while living with this health condition
Organizer
Jamie Cole
Organizer
England
PoTS UK
Beneficiary