Life with TTP
Getting back to normal after a TTP episode is possible, but take your time
When recovering from TTP, some people can feel eager to return to their normal lives. Everyone has a different experience of TTP, so everyone has a different recovery. Your recovery should be guided by how you feel, and it should happen on your own timeline. Take things slowly and listen to your body. If you have any questions, contact your healthcare team.
Neurological difficulties during TTP recovery1
It’s not uncommon to have neurological problems when you’re recovering from a TTP episode. You might not realize these problems are TTP related, especially if you’ve been feeling better. Be on the lookout for the following issues, and let your doctor know if you experience any of them:
• Memory problems
• Confusion
• Loss of concentration
• Dizziness
• Lack of balance
• Headache
• Double vision
Mental and emotional health after a TTP episode
After you finish your TTP treatment, you will likely be feeling a lot better physically. But it’s completely normal, and even common, to not feel better mentally and emotionally. A TTP episode can come on suddenly and be very scary, and you might experience a lot of feelings afterward. Many people feel a lot of anxiety and stress after a TTP episode because they’re worried about having another one. Checking in about your mental and emotional health after a TTP episode is just as important as monitoring for physical symptoms.
A healthy diet, getting enough sleep and exercise, and connecting with loved ones and friends can all help support your mental health. But what will help the most is being open and honest with your care team. If you’re suffering from clinical depression or anxiety, they can make sure you get the help and support you need. You can even discuss the best way to add mental and emotional health to your ongoing TTP management plan.
Many people wonder how TTP may impact their future plans
Things like traveling with TTP are absolutely possible; they just require some careful planning. Talking to your doctor about travel or the possibility of starting a family can ease your mind and help you make the safest decisions.
“There’s nothing I don’t do, but I just get more tired… A TTP diagnosis doesn’t need to hold back your life.”
—Jo, living with TTP
Tips for traveling with TTP
Read advice from TTP expert Dr Paul Coppo about traveling if you have TTP.
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Before you go, talk to your doctor about the risk of a TTP episode while traveling
— They may do a blood test to measure your ADAMTS13 levels to make sure the risk is low -
If you recently had treatment, you may be at a slightly increased risk for infection
— If you have a fever or other symptoms of an infection while traveling, talk to a doctor -
Talk to your care team if you have to get any travel-related vaccinations
— Your team should consult on any vaccinations you might need in order to visit another country. Generally, you should be able to receive vaccines if your ADAMTS13 activity is normal -
If you feel sick while traveling, contact a doctor right away
— You want to make sure you’re not having a TTP recurrence -
Bring important information with you
— Make sure you have contact information for your care team so you can call them if you need to
— It’s also a good idea to bring documents that explain TTP in detail, including your TTP symptoms and care plan, in case you need to share them with a doctor you don’t normally see
Pregnancy and TTP2
Pregnancy can be a trigger for a TTP episode, but planning with your doctor can help prevent recurrence. Make sure you talk thoroughly with your care team if you’re planning to become pregnant so you can make the safest decisions.
You can experience more than 1 episode of TTP. This can impact your everyday life. Be open with your doctor about your experiences living with TTP.
TTP is rare, but you’re not alone. Learn from others who have been there.
Are you or a loved one living with TTP? There are groups that can help.
References: 1. Riva S, Mancini I, Maino A, et al. Long-term neuropsychological sequelae, emotional wellbeing and quality of life in patients with acquired thrombotic thrombocytopenic purpura. Haematologica. 2020;105(7):1957-1962. doi:10.3324/haematol.2019.226423 2. Joly BS, Coppo P, Veyradier A. Thrombotic thrombocytopenic purpura. Blood. 2017;129(21):2836-2846. doi:10.1182/blood-2016-10-709857