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Living with ITP

If you have ITP and you are tired, depressed, have muscle aches, mood swings, dread the next platelet count, or are just plain scared, you are not alone.  There have been several studies that confirm people with ITP often struggle with their disease and treatments. 4,5,6  The good news is that there are things you can do to help minimize these problems and improve your quality of life.


Find Help in FREE PDSA Publications

Coping with ITP (26 page booklet)
Living with ITP - Answers to Common Questions (38 page booklet)
Diet and Lifestyle Suggestions
Emergency Card


Meet Others

• 'Talk’ to others on the PDSA Discussion Group.
Join a Local Support Group.
Attend the Annual Conference


Improve Fatigue

Many people with ITP and other autoimmune diseases feel tired much of the time.1,2,3  There are many things you can do to improve your energy, such as diet changes, meditation, and yoga, that may also improve the platelet count.  See the Complementary Treatment Section of the Web site for ideas.


Get Caregiver Support

Find information at The National Family Caregivers Association, Family Caregiving 101, and Lotsa Helping Hands.


Wear Medical Alert Jewelry

Be prepared for an emergency. Stay safe and in style to alert paramedics and others of your medical condition.
www.medicalert.com or call 1-800-432-5378.
www.laurenshope.com
www.creativemedicalid.com/home
www.hopepaige.com
www.n-styleid.com/medical-id-alert-bracelets.html

These links are provided as a public service and does not imply endorsement or support of any product, program or organization. The information on this Web site is provided for educational purposes only. Consult a health care provider concerning your particular condition.


Deal with Prednisone Symptoms

Prednisone can have damaging effects and causes many problems for people with ITP.5  However, there are things you can do to lesson the problems of weight gain, muscle loss, bone loss, mood swings, etc. associated with prednisone use. "Coping with Prednisone" is a book that can guide you to a healthier life while taking this drug or after you have stopped.  It is available in The Platelet Store.


Stop Bleeding

Some doctors recommend Amicar (aminocaproic acid) or tranexamic acid to help slow mucosal (mucus membrane) bleeding, especially helpful for dental visits. The pill form can be carried with you and used in an emergency in case you start bleeding.  Ask your doctor whether this type of product would be good for you or your child.  Salt pork or bacon has also been used to stop nosebleeds.6


Remove Blood from Clothes

Just douse the spots with hydrogen peroxide. It makes the blood disappear and doesn't seem to harm the fabric.


Laughter is the Best Medicine

Comedian Rocky LaPorte kept us in stitches at the PDSA 10th anniversary party in Chicago.
Now hear excerpts from his new CD or order it online.
http://www.rockylaporte.com/
http://cdbaby.com:80/cd/rockylaporte


References

1. "How Inflammatory Disease Cause Fatigue." Medical News Today. 19 Feb 2009. http://www.medicalnewstoday.com/printerfriendlynews.php?newsid=139443
2. Newton JL et al. “Fatigue in adult patients with primary immune thrombocytopenia.”  Eur J Haematol. 2011 May;86(5):420-9.  http://www.ncbi.nlm.nih.gov/pubmed/21323737
3. Blatt J et al. “Fatigue as marker of thrombocytopenia in childhood idiopathic thrombocytopenic purpura.” Pediatr Hematol Oncol. 2010 Feb;27(1):65-7. http://www.ncbi.nlm.nih.gov/pubmed/20121557
4.Snyder CF et al.  “Health-related quality of life of immune thrombocytopenic purpura patients: results from a web-based survey. “ Curr Med Res Opin. 2008 Oct;24(10):2767-76. http://www.ncbi.nlm.nih.gov/pubmed/18715526
5. Berti D et al. “Impact of corticosteroid-related symptoms in patients with immune thrombocytopenic purpura: results of a survey of 985 patients.”  Clin Ther. 2008 Aug;30(8):1540-52. http://www.ncbi.nlm.nih.gov/pubmed/18803995
6. Humphreys I, et al. “Nasal packing with strips of cured pork as treatment for uncontrollable epistaxis in a patient with Glanzmann thrombasthenia.” Ann Otol Rhinol Laryngol. 2011 Nov;120(11):732-6.  http://www.ncbi.nlm.nih.gov/pubmed/22224315