Meet Hannah: a 27-Year-Old with EDS, POTS, MCAS, and Blood Cancer Fundraising for Treatment in the USA

Hannah Evans, a 27-year-old woman from South Wales with several rare diseases, has reached her £37,500 fundraising goal that will support her trip to America to access an experimental and potentially life-saving treatment.

Hannah suffers from a combination of three conditions: Ehlers-Danlos syndrome, POTS, mast cell activation disorder, and a blood cancer. The blood cancer is so rare that she’s actually the first person in the UK to be diagnosed. Because she was turned down for funding, her Just Giving page is still open.

A very complex connective tissue disorder which affects sufferers differently. With me, it affects my mobility, energy and a lot more. Many people with this condition are in pain daily. Postural Orthostatic Tachycardic Syndrome (POTS)�My body’s autonomic system doesn’t work properly, so everything my body is meant to do automatically, such as control heart rate, blood pressure, body temperature, digestion, etc. doesn’t work. This wreaks havoc on my body and my ability to live day-to-day without medical intervention.

  1. Ehlers-Danlos syndrome (EDS)

EDS is a very complex inherited condition that causes weakened connective tissue, and affects each person with it differently. It is often linked to very flexible joints and skin that stretches and is easily damaged or bruised.

Hannah explains, “With me, it affects my mobility, energy and a lot more. Many people with this condition are in pain daily.”

  1. Postural tachycardia syndrome (PoTS)

POTS is characterised by a large increase in heart rate from standing or sitting up, caused by the automatic nervous system functioning differently from that of most people. People with PoTS can experience dizziness, fainting, and fatigue amongst other symptoms.

Hannah adds, “My body’s autonomic system doesn’t work properly, so everything my body is meant to do automatically, such as control heart rate, blood pressure, body temperature, digestion, etc. doesn’t work. This wreaks havoc on my body and my ability to live day-to-day without medical intervention.”

  1. Mast cell activation disorder

This condition seriously affects immune system functioning. As a result, allergies and even small infections become huge risks that can make Hannah extremely ill. To manage the condition she has begun wearing a mask whenever she goes out.

The combination of these three rare conditions makes treatment very complex. On her Crowdfunding page, Hannah says that to manage her conditions she has taken “over 100 oral meds”, and has to have “16 IV injections via my Hickman line 4 times a day.” The Hickman line is a plastic tube that connects to her heart. She says, “I spend up to 60% of the year on IV treatments at home or in hospital.”

However, one treatment that Hannah believes could be lifesaving is in the United States and paying to access it will be expensive. Hannah and her family fundraised with a goal of £37,500, which has now been exceeded. In total, she has received £16,065 in donations from 547 supporters through her JustGiving fundraiser page. She has been supported by communities who found her through the internet, as well as family members and friends who have completed runs and other fundraising initiatives in her name.

She says, “Thank you for your kindness and generosity, it means a lot.”

After the goal was reached her mother Helen updated her Facebook page. She wrote, “Thank you all from the bottom of my heart for the support and generosity you’ve shown towards my daughter.”

She also asked for understanding the family, which is focusing on planning the trip to America and helping Hannah keep her energy levels up in the lead-up to the trip. This means that they aren’t able to answer all the questions they’ve been sent and reply to everyone individually. She wrote, “Thank you for your understanding, we’ll keep you updated as much as possible. Thank you again for all your support, Hannah, James and family.”

You can keep up to date with Hannah Evans through her blog, which can be found here.


Anna Hewitt

Anna Hewitt

Anna is from England and recently finished her undergraduate degree. She has an interest in medicine and enjoys writing. In her spare time she likes to cook, hike, and hang out with cats.

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