Living With Chronic ITP

Setting treatment goals and planning ahead for life with cITP

Now that you have the facts about cITP, what are some treatment goals you can plan together with your doctor?

 

  • Establishing a target platelet count
  • Getting platelets to your target count and maintaining them over time
  • Managing cITP symptoms so you can keep up with the daily activities that are important to you
  • Choosing the treatment that best suits your needs and lifestyle

Planning ahead: Tips on daily life with cITP

cITP 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, in addition to your cITP treatment.

Eating right

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 be confusing. 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.

 

Do eat:

  • 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
  • Oils

Limit:

  • Saturated fats
  • Trans fats
  • Added sugars
  • Sodium (salt)

Being active

Getting exercise is another important part of staying healthy. Even with low platelet counts, most people with cITP can still 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
  • Archery
  • Some types of dancing
  • Elliptical machines
  • Fishing
  • Tai chi
  • Snorkeling
  • Stationary bike training
  • Stepper training
  • Swimming
  • Walking

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 cITP 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 cITP
  • Ask extended family and friends for help, such as, for example: 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 cITP, 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 supportive community 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.

Helpful links

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

 

Providing medical, emotional, and lifestyle guidance, as well as helpful daily tips for people and families living with ITP

 

Health Monitors PDSA-reviewed guide for anyone living with ITP

 

Furthering the understanding, diagnosis, treatment, and prevention of certain blood and bone disorders through educational resources, tools, and tips

 

NHLBI promotes the prevention and treatment of heart, lung, and blood diseases

 

Providing a unified voice for those with rare diseases and their caregivers, seeking to help them so they won’t have to fight their battle alone

 

You can also sign up for the PROMACTA Patient Support Program here.