Trigger warning: discussions of mortality rates, relapse, acute episodes

https://cdn.prod.website-files.com/647db4aaf09983ecda2c7be1/660c5bf8be88a487bc1f86bf_bradbury-bell-2024-the-ttp-specialist-nurse-an-advocate-for-patients-and-professionals.pdf

A recent article published in British Journal of Nursing, 2024, authored by Clinical Nurse Specialists Jessica Bradbury and Joanne Bell. Jessica and Joanne work as TTP Nurse Specialists at the Liverpool TTP Centre.

Do you have a dedicated TTP nurse as part of your care?

I am happy to share that we have seen an increase in my Adamts13 post Truxima infusions. This relapse my response was delayed but my hematologist has described this as something I should not be concerned about. Ultimately the infusions are working and my body is fighting. It has been a rough couple of weeks between the exhaustion, bone pain, headaches, and overarching feeling of being unwell but things are improving! I unfortunately have experienced a large amount of hair shedding which has been attributed to the stress of this experience. Transparently, losing this much hair has been incredibly hard on my mental health. I tried so hard to keep it healthy and intact. I understand it is a small concern all things considered but I mention this because it has broken my spirit a couple of times recently and I’ve struggled to cope with the loss. Please know if you are reading this and can relate you are not alone, it will grow back and it is okay to be sad about some of the smaller impact changes you experience fighting TTP. We are humans and for many of us our hair is part of our identity. Knowing that my Adamts13 level is increasing has definitely made an impact on my emotional wellbeing as I am much less worried than I was which I am sure many of you here can relate to.

Thrombotic Thrombocytopenic Purpura is scary. There is still so much unknown surrounding this disease but as we’ve seen and will continue to see there are many resources and people out there dedicated to helping us. Over the past couple of years we’ve seen amazing research and results supporting new treatment options which will impact us all in extraordinary ways. Again, I remain hopeful for the future and improvements in our quality of life. As I have mentioned in previous posts this is my third relapse since diagnosis and as a “chronic relapser” I am well aware it may not be my last but this blood disorder does not define me and it will only control my life as much as I chose to let it. As a reminder - you are responsible for how you chose to play the cards you’ve been dealt. Mindset is everything!

Thank you all for your support, It’s been a pleasure getting to know some of you via private chats and reading the stories you have shared. I welcome anyone here to reach out, I’m happy to chat and appreciate your understanding as my responses have been delayed due to not feeling well.

The plan is to give my body time to rest through the end of this year. Beginning next year I will work with my team of providers to restart the process of trying to conceive.. 🤞🏼

I look forward to sharing my journey with you all. More to come..

🫶🏻

During my recent infusion there was a wonderful hospital employee coming around making these little jars with the patients. Pictured are the ones my fiancé and I made. Mine is the one full of rose petals, lavender, and a few other lovely scented flowers. He made his with lemon pieces, sunflower petals, and a few other brightly scented plants. It was a small gesture that brought us lots of joy! 🪻🌼🌺🌷

When I had it back in the late 90s, I had plasmapheresis, chemotherapy(vincristine), blood transfusions, and steroids. I also had to take liquid potassium which smells good but OMG the foulest stuff to pass my lips. My hematologist also said if I had a relapse they’d remove my spleen.

I was wondering how things have changed since then.

Trigger warning: includes patients stories, sounds and and visuals from intensive care units.

‘YOU, ME & TTP’ is a 30 minute film made by patients living with TTP supported by their clinical team, families and friends. The film follows a number of patients speaking honestly about their personal journeys and features some of the long term neuropsychological symptoms and isolation that some patients living with TTP experience. It portrays the spectrum of how patients are affected by the diagnosis of a rare disorder, and is aimed at offering comfort and signposting for patients and carers affected by the condition.

The making of the film was funded by a Wellcome Trust grant and The Liverpool TTP Patient Welfare Charity fund. Director, Alex Blogg from New Leaf, has a track record in making healthcare documentaries, and has sensitively worked with the Liverpool TTP Centre and patients to deliver a film created by patients for patients.

https://youtu.be/NjUgYiRWY88?si=zO49USIdmA1mJGfb

What do you think about the film?

https://www.ttpnetwork.org.uk/news/ucl-support-group

https://cdn.prod.website-files.com/647db4aaf09983ecda2c7be1/6703fcd8196b9b432f53d95c_A%20roadmap%20to%20achieving_optimal%20care%20for%20Thrombotic_Thrombocytopenic%20Purpura_Approved.pdf

I wanted to share this from my friend, Kate. Kate was diagnosed with TTP 6 months after me and we met through the TTPNetwork and became firm friends. She’s very modest and would never recognise just how far she’s come on her TTP journey. Kate is a graphic designer and whilst she was hospitalised in December 2023, although experiencing some loss of vision due to the onset of TTP, she didn't want to let it stop her creating designs. She covered the front cover of her hospital notebook in little creatures, and is now using these illustrations to create a design on a sweater for the brand she designs for! 10% of all purchases are being donated to the TTPNetwork.

I wanted to share this story as I think it shows a real example of turning pain into purpose in the face of TTP. I’m also just a proud friend!

If you want to check out the sweater, it’s here:

https://www.thunderegg.co.uk/products/home-of-rainbows-unisex-keep-life-colourful-sweater-charity-donation

It’s a year out from being diagnosed with TTP and being hospitalized for 4 weeks and treatments. Is fatigue something normal to experience even a year out? My last lab work said my platelets were 298. I just don’t understand why I’m so tired all the time. And why I have dull headaches. Has anyone else experienced a lot of fatigue? And what are some other symptoms you all have experienced post treatment?

My doctors aren’t much of a help.

Episode 1: https://open.spotify.com/episode/7ffjNbwpIpCU7i4ms3v2ic?si=3fpoKvCqT_yroiVyCZFgnA&context=spotify%3Ashow%3A6DqJioMbxFd4Zs6rnJwywo&t=14

Episode 2: https://open.spotify.com/episode/6azDj6pWe1Em6F1THAX5hs?si=UHo6MMAiTqm2uj0_lAuKDg

Episode 3: https://open.spotify.com/episode/6g3h791CsoSzOK3ZDLxjqf?si=0BQqb7OxRWeJLTb9x2oLwA

Episode 4: https://open.spotify.com/episode/5EWxZCIimQpmH2LNzxcJF2?si=siujsf5ERw-fpabANnp0VQ

Just following up after my last post. I am now two truxima treatments into this round and my Adamts13 has continued to decline. I can certainly feel my body fighting, this relapse has been one of the roughest I’ve experienced thus far. The exhaustion, bone pain, brain fog, and overall sense of being unwell is real. I remain hopeful that my body is just experiencing a delayed response this time and we will see an increase here soon!

TTP can feel so defeating and consuming. I know so many of us crave the normalcy we experienced in life before diagnosis. I was young and took my health for granted. I have come to terms with this being my new normal but I’d be lying if I said I am not bitter at times. There’s nothing like the feeling of your own body fighting against you. I will continue to share updates here. Thank you everyone for engaging in this community and supporting eachother. It brings me joy to have the resources we do. The TTP community is small but mighty! 💪🩸

This content is aimed at clinicians, pathologists etc but, a very interesting video for anyone with an interest in TTP-

https://youtu.be/_Fe0-mQ_IVM?si=1zVEOJRT4kPz7Ufy

“In this episode of “Lab Medicine Rounds,” Justin Kreuter, M.D., interviews Ewa Wysokinska, M.D., an assistant professor of medicine and consultant in the Division of Hematology and Medical Oncology at Mayo Clinic in Florida, to talk about clinical updates in thrombotic thrombocytopenic purpura.”

Not sure if anyone has got one of these already but the TTPNetwork offer an TTP ID Alert card you can download to your mobile-

https://pass.ttpnetwork.org.uk

I've recently been unwell with a virus so I'm having bloods done on Thursday to check everything is holding up ok. My anxiety is through the roof and always is in the lead up to bloods. I've only been diagnosed for 14 months so still getting to grips with living with TTP.

Does anybody have any tips on how they manage the anxiety of living with TTP?

Here’s an article explaining the difference. Many hospitals are now generally giving Truxima instead of brand Rituxan due to cost.

https://ashpublications.org/blood/article/132/Supplement%201/3750/265170/Single-Centre-UK-Comparison-of-Biosimilar

Hello! My name is Sharon and I was diagnosed with TTP back in 1998. A couple of things happened leading up to my diagnosis.

I separated from my husband in March so lots of stress. I moved back in with my parents.

I had a bout of Mono.

Looking back, I don’t remember if I had any symptoms. Of course it’s been 26 years ago.

April 26, I was home alone because my parents had gone to my brother’s senior recital at college 4 hours from our house. I wasn’t feeling well - had pain in my side. I also had noticed a small bruise on my right thigh about the size of a quarter but nothing alarming. I called my primary care physician and he told me to go to the ER to be checked out. I left a note for my parents.

I went to the hospital and they did all the general blood work. They came back into my room and asked if I ever had a problem with low platelets. I said no. My platelet count was 30,000. So they were admitting me.

At this point I called my friend to come and sit with me. She lived right around the corner from the hospital so it was very convenient.

The next few days were a blur. I’m a huge fan of Lurlene McDaniel so I knew what the low platelet count could mean. I had a bone marrow aspiration, which I knew they were doing to look for leukemia.

At one point during my hospital stay I got up to go to the bathroom. I had my period which didn’t help matters at all. I woke up in the shower stall, having passed out.

At this point my hematologist has her husband come and check me out (he’s a cardiologist). They determine that I have ITP and they want to move me to another bigger hospital because there was a shortage of the medication.

Anyway they gave me a blood transfusion and they transported me to Hahneman.

I get to the new hospital and I am put in a room with another woman. The next day I have a Shiley put into my right leg.

The lady comes into the room to do my plasmapheresis. I said I wanted to use the bathroom first. I got up and immediately passed out. I woke up to what seemed like 10 doctors and nurses around my bed. I’d developed a hematoma in my leg.

I was transferred to ICU. My parents were not told and imagine how scary it was for them to go to my hospital room and find out I wasn’t there.

Anyway during my hospital stay my platelet count went down to 2,000 I think. My RBC went down to 5. I had my second shiley put in at the two week point I think. At one point I had to drink liquid potassium which is the most disgusting stuff ever.

I was in the hospital until May 22.

This was when I was 24. Fortunately I haven’t had a relapse. But it’s very scary.

That’s my story.

I’m sure so many of us relate to this story and advocating for plasma donations:

https://www.sunlive.co.nz/news/352216-plasma-donations-save-bop-womans-life.html

As much as I hate to see anybody else join the TTP club, it’s great to see more and more news stories pop up about our disorder. Hopefully this continues to raise awareness.

Sending lots of strength to Megan and her family as they navigate those strange few weeks (months/years) following a TTP diagnosis.

It’s not very often we see the valuable experiences of our CTTP warriors shared, really great to see this-

https://www.takeda.com/our-impact/our-stories/a-new-mother-faces-the-challenge-of-the-rare-disease-cttp/?fbclid=IwY2xjawFn90RleHRuA2FlbQIxMQABHSrcB3yEs_NrQS4CVuiIJSv-09KXI2fz92dK7LpmZrJHOGAS2UQTGvdnWg_aem_FSbAbNki9CoGC7TtD3hP7A

I’d like to recognize u/FifiJambouree for everything she has done to help me build this sub and the comfort she provides to our users. She will now partner with me as a moderator to continue the journey together of providing support and resources within our TTP community. Fifi is based in the UK and I am in the United States, if you would like insight into our individual journey with this disease please see the “share your story” or “new member intro” threads. We are both very happy to provide support to our users.

Please do not hesitate to contact us for anything and everything you may need, even if it’s just an ear to vent to. We will listen - no pressure, no judgment.

You are not and do not have to be alone. 🤝🩸🤍

I thought this was a really interesting and powerful story.

Particularly rare to see a father/daughter haematology duo, let alone both having a passion for our rare disease.

https://news.med.miami.edu/father-daughter-cancer-doctors-evaluate-historic-patient/

I am going tomorrow to retest. I have relapsed every 2 years since diagnosis. Usually at the end of September, like clockwork. This is so exhausting. I am only 30 and the thought of living this way for the rest of my life can be so overwhelming. I got my gallbladder out 4 months ago and I am just so tired.

I don’t mean to be negative or discouraging. I created this sub to provide us a safe space. For the good, bad, and in between. This is unfortunately life with TTP.

Apparently yesterday was International TTP Day! I had no idea but just wanted to say I hope all of my fellow warriors are in good health and doing well. If you're going through treatment, keep your head up and your heart full; you've got this ♥️

Amazing to see this article! I've attended the TTP Centre for some treatment last year and can honestly say the team are phenomenal. It's so encouraging to see them leading this trial and I hope plasma exchange will become a thing of the past for all of us one day-

https://www.liverpoolecho.co.uk/news/liverpool-news/grandad-19-first-uk-receive-29877183.amp?fbclid=PAZXh0bgNhZW0CMTEAAaYHbkZkfSFzf_mZYPVhKTe7q78dP45vGE_tX_yac8FvEhBjVoNNxU7Fu4g_aem_eEx1l_CI112fgvlvSFpeSg

https://www.pritzkerlaw.com/ecoli-lawyer/e-coli-ttp/

If so, how often are you getting it checked?