I have just been diagnosed with cTTP following a consultation with my healthcare professional; what steps can I take?
A diagnosis of cTTP can be overwhelming and this condition can affect aspects of your daily life.1 There may be times when you need to manage cTTP alongside life changes like relocating, going to college, or deciding to travel. Read on to find information and practical guidance below to help you cope in your daily life after your cTTP diagnosis.
cTTP could affect certain aspects of your life
You may feel anxious or stressed about how cTTP impacts:
- School
- Work
- Your finances
- Your family planning
- Your social life
Or you may find it difficult to talk to other people about cTTP and how it affects you.
#1 Leaving the hospital
Before you leave the hospital, consider asking your doctor or nurse for a contact number to use if you have any questions after leaving the hospital, such as symptoms to look out for when you are recovering at home.
#2 Talking to people about cTTP
Living with a rare condition can sometimes be isolating.2 You may feel that family, friends, your partner, colleagues, and teachers do not fully understand your experiences. Talking to people about cTTP can help lessen anxiety around continuing work or school, socializing, and asking for support.
#3 Connecting with family and friends
If you are feeling low or anxious, it is helpful to have understanding from the people you trust. We are all different, so it can help if you explain the type of support you need. For example, support with specific tasks, like grocery shopping, babysitting, or driving you to hospital appointments.
#4 Talking to your employer or child’s teacher
If you need time off for treatment or additional support to continue your, or your child’s, work or studies, it may help to speak to your employer or your child’s teacher about cTTP. For example, you could ask them about flexible hours or working from home.
Connecting with people affected by cTTP
Even though cTTP is ultra-rare,1 there is a community of people to share stories and experiences with. Support groups allow you to connect with people in a similar situation to you, they may also benefit your friends and family. Patient organizations can also be a valuable source of information; helping you to understand more about cTTP and your treatment. You can find out more about support groups and patient organizations here.
