Primary Immune Tribune
October 2016


IDF PI CONNECT Webinar on Emotional Health in PI
Discover Tools and Strategies

Do you have questions about dealing with the emotional impact of PI? Have you thought about how you may be affected? Join us at the next IDF PI CONNECT Research Forum Webinar: "Emotional Health in Primary Immunodeficiency: Tools and Strategies to Feel Better" Wednesday, November 2 at 8:00 PM ET to discuss this vital topic.

Open to everyone (with or without an IDF PI CONNECT account), this webinar will address:

•    Tips on recognizing and dealing with anxiety and depression
•    Results from the PROMIS 29 Quality of Life Survey 
•    Q&A session to answer participants’ questions

Click here to register. If you are unable to attend, the recording of the webinar will soon be available after the live version at www.idfpiconnect.org.


IDF Walk for PI Brings Together the PI Community

This fall, people of all ages across the country are coming together for IDF Walk for Primary Immunodeficiency 2016, reminding those affected by these disorders that they are not alone and that there is a community who understands. One mom shared this photo and post on Facebook after IDF Walk for PI in Cleveland: 

“Thank you for today. This day means so much to our family because it's truly a time we don't feel different or alone. Instead, we feel accepted and a part of a community. So, thank you from Buffalo, NY.” – Elizabeth, Mom of a Child with PI. 

Let’s remember why it’s important to come together and to form a strong community. The funds raised from IDF Walk for PI help create a better future for our community, so that no one will feel different or alone. 

To find a walk near you, visit www.walkforPI.org, or join the Virtual IDF Walk for PI. Don’t forget, you can raise funds through the end of the year! 

Thank you to Elizabeth for sharing your #walkforPI experience!



How Your Donation to IDF Benefits the PI Community
It Does More Than You Think!

By donating to IDF…

  • You save lives!
    Newborn babies with SCID are identified through the efforts of the IDF SCID Newborn Screening Campaign. This along with our PI awareness campaigns help promote early diagnosis.
  • You educate patients and improve their quality of life.
    IDF publications and resources help people get information they can’t find anywhere else—knowledge that can help them understand and manage their diagnosis. IDF answers requests everyday, ranging from finding providers to helping with health insurance issues.
  • You bring together those living with PI—there is strength in numbers!
    Lifelong friendships and supportive communities are created at IDF programs. Because PI is rare, it is a special occasion to meet someone who understands.
  • You care for future generations.
    IDF research and awareness campaigns give thousands of people waiting for a proper diagnosis a second chance at a healthier, longer life.

As the holiday season approaches, please consider supporting IDF—your donation does so much! If you have already made your annual gift, thank you.

Click here to donate now. If IDF has changed your life somehow, please let us know. Share your story with us, and e-mail development@primaryimmune.org.


Does Your Doctor’s Office Have This IDF Poster?
Make Sure It Does!

You are needed to serve as an IDF Liaison in your area! IDF Liaisons are volunteers who visit local healthcare professionals who care for individuals diagnosed with PI. By building relationships with clinicians, you encourage them to discuss the IDF resources with their patients and distribute helpful IDF materials.

Visit the IDF Volunteer Connection Center to sign-up to become an IDF Liaison: www.primaryimmune.org/volunteer.

Questions? Contact the IDF Volunteer Development Manager: 800-296-4433 or volunteer@primaryimmune.org.

IDF Liaisons are a part of the IDF Outreach Initiative, which is supported by Lead Sponsor Shire.


Next Quality of Life Survey Begins November 1
Take the Survey at www.IDFePHR.org

The next round of the PROMIS-29 quality of life survey begins on November 1 at www.IDFePHR.org and will close at the end of November for another six months. The survey measures physical, mental, and social health, and can be used for many chronic conditions. Participants receive instant customized reports of how their health compares to the general population. This information can be used as a way to better manage your health and help your healthcare providers guide your care more effectively.

To participate in the PROMIS-29, sign in to www.IDFePHR.org, click on "Health Tools" and then "Surveys" in the top navigation links to participate. 

If you have any questions regarding this upcoming study, please contact IDF at 800-296-4433 or info@idfephr.org.



Since You Asked
Question & Answer

Question: I have been experiencing muscle and joint pain after I receive my IVIG treatment.  Could this side effect be alleviated if I did subcutaneous infusions? Does IVIG or SCIG cause the worst side effects?

Question: I live in a small town and was diagnosed with CVID (Common Variable Immune Deficiency) two years ago. I am receiving Ig therapy and still having breakthrough infections. Recently, I also developed severe GI issues. My doctor is very nice, however, admits that I’m a complicated case and one of only three patients with PI at the clinic. I’m thinking that I should probably find a new doctor. How do I know where to go and who has experience treating CVID?

Click FULL STORY to see the answer to these questions.


[FULL STORY]


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Primary Immune Tribune is sponsored by an educational grant from Grifols.


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