TTPNetwork and FEDHEMO: supporting patients with thrombotic thrombocytopenic purpura (TTP)
TTPNetwork: a UK charity supporting patients with TTP
Thrombotic thrombocytopenic purpura (TTP) is a life-threatening condition that comes with a life-long risk of relapse. The UK-based TTPNetwork connects, informs and supports people affected by it. RARE Revolution met with Jo, the organisation’s founder, who explained how it meets the TTP community’s needs
“I hadn’t had much experience with hospitals, and I didn’t really want to go for a blood test, so it took hours to get myself down there. Once I had done that, I thought that that was the worst bit over… ”
It was 1995 and Jo was 24 years old, working hard and making the most of her twenties. She blamed her busy lifestyle for her constant fatigue; the idea that there might be something amiss with her health had not crossed her mind. This suddenly changed when her friend noticed big, colourful bruises on her skin. The look of concern on her friend’s face spurred Jo to visit her doctor, who promptly sent her for blood tests.
Returning home, the last thing Jo expected was a series of urgent messages left on her phone: “It transpired I was desperately ill and I needed to go straight into hospital.”
She would spend the next four weeks in hospital: “one week while they tried to work out was wrong with me, two weeks of treatment in ICU and one week of treatment back on the ward, plus weeks of outpatient treatment. After surviving this acute episode, Jo ended up in hospital again 18 months later:
“I got bruising again, and I kind of recognised it, even though nobody really said to me to expect it to come back.”
In the late 90s information about TTP was hard to come by: “This was before everybody had a computer in their home and I couldn’t really find anything in the library. And most of my doctors hadn’t heard of it.” Feeling confused, lonely and isolated, Jo looked to see if a support organisation existed, but there was none to be found. Jo wrote a letter to Woman magazine sharing her contact details in the hope of founding her own group. The handful of responses that followed were the building blocks she needed to start TTPNetwork.
“As the name suggests, TTPNetwork is a network that patients, their families and medical professionals that deal with TTP can get support from.”
“Very early on, I realised it’s not just patients who come to us. It’s the next of kin as well, who want to support their loved one. We also have lots of nurses who want to put their patients in touch with us. Our aim is to provide support for all these groups.”
The early days of TTPNetwork saw Jo writing to her new contacts by hand and then sitting at a computer typing out newsletters two or three times a year. A computer-savvy friend had downloaded and printed medical research papers, which filled an archive box, and Jo pored over these documents with a medical dictionary to understand the condition better.
For most of its existence, TTPNetwork has been run as a non-profit, with people donating stationery and giving their time—first to develop a website and then to start a Facebook group and to organise meetings. Jo is grateful for the support of University College London Hospitals Charity, who helped fund the website. She is also grateful to the longstanding volunteers, including Saida, Gemma and Gabriella, who give their time for the benefit of patients.
As time went on, the demands on Jo and her fellow volunteers have grown. “I was being asked to get involved with things such as putting across the patient perspective and working with NHS England to create specialist centres.” With this, Jo felt that she needed to put the organisation onto a proper charitable footing, and after much hard work TTPNetwork achieved charity status in 2021, which Jo hopes will open up more opportunities to support patients.
The membership of TTPNetwork has grown substantially from its small beginnings: it now has over 800 members, mostly from the UK and Ireland, where its support is targeted, but further afield too. TTPNetwork supports its members through peer networking opportunities and the provision of information about the condition.
An acute episode of TTP can be traumatising and leave patients feeling fearful about what the future may hold, Jo says. “It is common for patients to live in fear of relapse… In their first episode, perhaps they had a stroke, or they were in a coma, or they were rushed into hospital with a blue light. Just being in hospital is super traumatic for some people.”
Jo has had three relapses since her first episode. In 2019, there was a threatened relapse too, but the signs were spotted in time, so she avoided an acute episode. Now, Jo carries on with her life more or less as normal, with some allowances to manage fatigue, reassured by her three-to six-month regular check-ups and the protocols in place to prevent relapse.
“Because I spotted the signs earlier in each of my relapses, the experience was much better for me because I wasn’t as ill. And that’s the message we try to give: regular monitoring can help keep TTP in check.”
Jo has lived with TTP for a long time now and has come to terms with the risk of relapse, but she is fully aware that this is not the case for everybody, especially for those who are newly diagnosed: “They just worry about that next appointment and what the blood results are going to say.
“Their fear extends to their choices around holidays, their choices around jobs, their choices around healthy eating and medication. Having children too. So, it really does permeate into lots of aspects in their life.”
To help patients with such pervasive worries, TTPNetwork has a private Facebook group, where people can share their experiences and offer support, in the forum itself and through private messages. On top of this informal peer support, the charity also offers patients the opportunity to have a buddy. “This tends to be somebody who’s fairly recently diagnosed, and we link them with someone who’s further along,” Jo explains.
Jo highlights how there is a pressing need for more knowledge within the TTP community—for doctors as well as patients: “You’ve got two groups, really. You’ve got patients who have been informed correctly, they’ve got good consultants, good links with their consultants, and they’re under regular care, and they understand the risk of relapse…”
“And then you’ve got patients who’ve never been told there is a risk of relapse. In fact, they were told the complete opposite: they were explicitly told ‘this is one off, this won’t happen again’.”
“These patients are just walking around out there, not knowing that they’re at risk of relapse. Not knowing that if they were regularly consulting, they may be at a lower risk of a relapse. And they’re not getting any follow-up, so we try to catch those people and signpost help to them.
“If patients aren’t having regular consultations with a haematologist who specialises in TTP, that needs to happen. And haematologists who have TTP patients need to be referring these patients into the specialist centres once they are fully up and running.”
In the UK, specialist centres for TTP are due to open soon and Jo is excited by their potential to “dramatically improve care for patients”. Jo says that the TTPNetwork is looking forward to supporting that enhanced care by continuing to provide timely and accurate information to patients, working alongside these centres of excellence.
“We’ve got a host of information on our website, including articles and webinars: information on what TTP is and what the treatments are, on studies and on COVID-19.”
The website also features a document that people with TTP can take with them if they are going on holiday, so they can feel confident in their care if they were to relapse or feel unwell. Translated into more than twenty languages, the document states who is leading care for the patient and gives contact details for them. It stresses the importance of early effective management and gives guidance about that.
The Spanish Federation of Hemophilia, FEDHEMO, and its support for people with aTTP
FEDHEMO is a non-governmental, non-profit organisation, whose objective is to improve the quality of life of people affected by haemophilia and other blood disorders, including aTTP, a rare and life-threatening blood-clotting disease. RARE Revolution met with the organisation’s president, Daniel-Anibal García Diego, who explained FEDHEMO’s objectives and activities
FEDHEMO has been supporting patients with haemophilia since its foundation in 1971. However, over the last 50 years, the scope of this small, Madrid-based non-governmental organisation has broadened. Today, it supports not only people with haemophilia but also patients with other blood disorders, such as acquired thrombotic thrombocytopenic purpura (aTTP).
The organisation’s main role is trying to improve the quality of life of people affected by these diseases, with a particular focus on psychosocial support. Through its lobbying activities it strives to raise awareness of the challenges patients face, so that policy makers and healthcare providers have rare diseases on their agenda and move to address specific unmet needs—not least the differing access to therapies that exist across the 17 Spanish autonomous regions. As an umbrella organisation, FEDHEMO also assists its 19 member organisations with programmes to enhance their operations.
Daniel explains that FEDHEMO has an ongoing project for aTTP patients called the ‘Purple Project’ (a play on words because the Spanish words for ‘purple’ and ‘purpura’ sound similar). The project aims to build a sense of community for people with the condition. FEDHEMO also serves the aTTP community by trying to meet patients’ often-unmet psychosocial needs. It also raises awareness of the key messages around this life-threatening condition with physicians.
FEDHEMO gives holistic support to patients within its aTTP community, but it is particularly attentive to their psychosocial needs. “Beyond the haematological complications of TTP, patients may suffer from depression, anxiety, ‘brain fog’ and extreme fatigue, which in some cases, the healthcare system is unable to help with. This is an unmet need, so we are pleased to be trying to address within our holistic approach,” Daniel explains.
Daniel says that the organisation’s psychologist, Maria Sánchez does “fantastic work” in helping people adjust to life after an acute episode. There are many and varied challenges here for people in terms of working, travelling or pursuing leisure interests. As well as the individual support she offers, Maria moderates an online mutual support group for aTTP patients, helping to guide the conversations constructively.
Daniel highlights how the impact of aTTP lasts much longer than the acute episodes themselves. “Many patients with this condition have a real fear of relapses, as these may be unpredictable. In some cases, people don’t travel because they’re scared to be more than an hour away from the hospital.”
Sadly, some patients need to leave their job because of aTTP. “This may be because of fatigue, anxiety, or sometimes, cognitive impairments caused by the episode.” He gives the example of a woman in her forties whose acute episode of aTTP brought her high-powered job to a premature end. It is not unusual, Daniel says, that people are unable to manage the burden of aTTP alongside the day-to-day demands of their occupation, and policymakers need to recognise the level of disability the disease causes.
Over the years, FEDHEMO has engaged with healthcare providers to reinforce key messages about the vital importance of rapid diagnosis of patients and prompt treatment. The COVID-19 pandemic temporarily prevented in-person educational events, but online events have continued.
Daniel illustrates FEDHEMO’s education efforts by highlighting a webinar that took place in May 2021. This was designed to give haematologists an overview of aTTP and the importance of rapid diagnosis and treatment. Maria spoke too, in order to raise awareness of the unmet psychosocial needs of the community. The clinicians attending the webinar also learned about the various ways FEDHEMO is supporting the community. Following this, there was a similar session for patients, giving them in-depth information in lay language.
There are plans for similar events soon, but these will be hybrid events that give people the opportunity to attend either in-person or virtually, addressing ongoing concerns within the community about COVID-19.
The International Thrombotic Thrombocytopenic Purpura (TTP) Day is on 21 September 2022 and Daniel is looking forward to the valuable coverage in the media that this brings the community. FEDHEMO will capitalise on that interest with an informative session featuring a haematologist, key opinion leaders and a patient representative.
To find out more about FEDHEMO, you can visit their website: fedhemo.com
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