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Living With the Disease
Tips on daily life with chronic ITP
Chronic ITP can be challenging. Nevertheless, with the help of the right treatment and a healthy lifestyle, it can be manageable. Here are some tips on how to take care of yourself holistically in addition to your chronic ITP treatment.
It’s no secret that your diet is an important contributor to your overall health. The trouble is, what exactly is in a healthy diet? There is a lot of conflicting (and complicated!) advice out there, which can leave people confused. Here are some tips that can help.
The US Department of Health and Human Services publishes Dietary Guidelines to help people make good choices when it comes to their diet. Here are some highlights from the guidelines to help you with yours.
- A variety of vegetables, including dark green, red, and orange; legumes (beans and peas); starchy vegetables
- Whole fruits
- Whole grains
- Fat-free or low-fat dairy products
- A variety of protein foods, including seafood, lean meats, poultry, and legumes
- Saturated fats
- Trans fats
- Added sugars
- Sodium (salt)
Getting physical exercise
Getting exercise is another important part of keeping healthy. Even with low platelet counts, most people with chronic ITP might still safely be able to do a number of different activities, such as the ones listed below. Consult with your doctor about whether these activities (and others) might be safe for you.
Get active! Try:
- Aquatic exercises
- Some types of dancing
- Elliptical machines
- Tai chi
- Stationary bike training
- Stepper training
These exercises are pulled from a list at Hemophilia.org’s Steps for Living, which has some great resources on safely exercising with a bleeding disorder. Visit the site to learn more.
Living with chronic ITP can sometimes be emotionally difficult. It is important to reach out for support when you need it.
Tips for taking care of yourself
- Identify your circle of support. Talk to friends and family when you need to. Be open and honest about the challenges of living with chronic ITP
- Ask those extended family and friends for help when you need it: driving to and from doctor’s appointments, looking after your children to give you an evening to yourself, etc
- Find things that you love to do and make time for them. Even small things can help
- Develop your skills and talents that are not limited by chronic ITP, such as cooking, learning a new language, gardening, or painting. There are plenty of things you can do while managing low platelet counts
- If possible, spend time with other people who have ITP or even other chronic illnesses. A little camaraderie can go a long way
If all else fails and you’re still feeling down, reach out to a therapist for help. You are not in this alone.
Here are some other resources that may help:
- American Society of Hematology www.hematology.org
Furthering the understanding, diagnosis, treatment, and prevention of certain blood and bone disorders
- Guide2ITP www.guide2itp.com
Health Monitor's PDSA-reviewed guide for anyone living with ITP
- HealthyChildren.org www.healthychildren.org
A site run by the American Society of Pediatrics. The chronic condition section might be especially useful for parents who have children with chronic ITP
- National Heart, Lung, and Blood Institute (NHLBI) www.nhlbi.nih.gov
NHLBI promotes the prevention and treatment of heart, lung, and blood diseases
- Platelet Disorder Support Association (PDSA) www.pdsa.org
A helpful resource for ITP education, advocacy, research, and support, the PDSA website can help you find ITP experts or hematology centers of excellence near you
- National Organization for Rare Disorders www.rarediseases.org
Providing a unified voice for those with rare diseases and their caregivers, seeking to help them so they won’t have to fight that battle alone
- ITP and Me www.itpandme.com
Providing medical support and also emotional, lifestyle, and daily ITP guidance to people with ITP
You can also sign up for the PROMACTA Patient Support Program here.