Read Talking about PI and IVIg treatments, part II: In the classroom
For many patients on Intravenous Immunoglobin (IVIg), one big hurdle is helping others—particularly family, friends—understand why the treatment is necessary.
Living with a Primary Immunodeficiency (PI) does not mean the patient must limit activity or cannot enjoy real quality of life. So if you or your child is an IVIg patient, how do you communicate that with your loved ones?
When discussing the treatment at home, it’s important that the entire family understands the details. Talk about the process with everyone, especially siblings, and show them how it works. Take care to understand how the IVIg is administered and what side effects there might be. This will vary depending on the product that you choose; here is a current list of the IVIg products that MedPro Rx carries. IVIg Comparison Chart
It is especially important that younger children understand how PI affects people, and in the case of brothers and sisters, what that means for life at home. Make sure your child’s sibling knows that having PI means he or she is more susceptible to getting sick. Practice healthy habits around the house, and foster a sympathetic environment for your child’s needs.
With your entire family sharing an understanding of the condition and the treatment’s side effects, the emotional burden becomes easier to bear, and you can come together to work through any problems. There are plenty of other families ready to discuss their own hurdles and triumphs, and it can be helpful to seek out support and advice online. The National Primary Immunodeficiency Resource Center hosts a message board, and the Immune Deficiency Foundation has created a community for patients and those close to them, in all stages of life, to share their own stories, which they call Reel Stories. There are plenty of resources that involve the entire family in a discussion about primary immunodeficiencies.
Talking about PI and IVIg treatments at home is a great place to start empowering yourself or your child to control the condition. A healthy and understand environment at home can do wonders for coping with any challenges that might come up!
Sources
http://www.primaryimmune.org/
http://www.info4pi.org/patientinfo/index.cfm?section=patientinfo&content=living