How to Reduce the Pain of a Kineret (Anakinra) Injection

…own to be very uncomfortable injections, such as Enbrel® (etanercept) and Humira® (Adalimumab). Here are some tips for making this shot less painful for your child, or yourself. Since everyone reacts differently, you or your child will find some of these tips work well, while others may not be effective or may even make the pain of the shot worse. Try different tips to develop a routine that makes using Kineret most comfortable for you and your ch…

Continue reading

“Perfect” Attendance Programs Stigmatize Kids with Chronic Illnesses

…t had good attendance, and publicly putting down those who didn’t, that he [the principal] pretty much did single me out? Hmm. (I’m finding it hard to work that out. Give me a minute.) “Yes, but the fact is you made no reference to me or other people who have a rare genetic disease! Obviously, I wouldn’t want you to single me out specifically. But by doing what you did, you could have damaged the emotions and stability of someone like me, that may…

Continue reading

How to Pay for the Tests and Care You or Your Child with an Autoinflammatory Syndrome Needs

…Several online sites allow you to raise money for personal uses. GoFundMe.com, YouCaring.com and FundRazr are some of the more popular sites. These are easy to set up. You fill out a section explaining what the money will be used for and give a background story. Then you can post your page online or in emails for others to see your story and donate directly to you. Before choosing a site to use, do read the fine print. Many sites will take a smal…

Continue reading