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Infusing Love: A Mom's View - A blog dedicated to mothers of children with bleeding disorders.

In our family, we are open to participating in research, thinking, “if it can help our kids or help a future family or patient then we are all for it.” So when the opportunity arose to be enrolled in a trail to test long lasting factor, we jumped on it. We did our homework and thought it might be the right product for my son, Jackson.

It seems like long lasting factor is all the rage now. Clinical trials are being held for patients to try these emerging clotting factor products, but is it all that it’s cracked up to be? What does long lasting factor “look” like?

jen_infusinglove_momsblogPrior to joining the trial, Jackson had done well with a prophylactic regiment of three times a week. We had no complaints with the manufacturer of that clotting factor product, so we wanted to wait until the same manufacturer offered their version of long lasting factor. We heard the debate about dosing means with longer lasting factor, but for us, one less stick a week was reason enough to switch. It meant one extra day my son’s veins could rest.

We signed him up in early January and there began our journey on a clinical trial. We also opted to participate in a study that includes blood draws at different time intervals to measure what percentage of factor is still left in his system. When we got the results back we were shocked at the half-life of his long lasting factor versus his previous regime. We were pleased with the results and even more grateful to be asked to be part of the clinical trial. To date we have had zero break through bleeds (knock-on-wood). We have had a couple of mouth bleeds, but only because some pesky front teeth couldn’t decide if they wanted to come out. Jackson likes the fact that he only infuses twice a week now. Don’t get me wrong… he still fights a little, especially if it gets in the way of him throwing a football outside with his daddy, but he understands why it’s important.

It’s amazing how far we have come in just seven years. One less poke is one more day of freedom.

Jen lives in Ohio with her husband, Joe, and their three children: Evelyn (21), Nora (14), and Jackson (7).

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Note from HFA:

Clinical trials may not be for everyone; nor could the selection of long lasting factor products. Consult your HTC or hematologist if you are interested in learning about clinical trials. Click HERE to learn more about making informed decisions regarding your or your child’s healthcare. This checklist of questions from a recent “Dear Addy” post could also be helpful:

Informed Consent/Shared Decision-Making Checklist for Surveys and Research Studies:

  1. Have the purpose of the survey or research study explained to you.
  2. Make sure you have enough time to read and understand the consent form before signing.
  3. Know in advance how long it will take to complete the survey or research study.
  4. Have all the steps needed to complete the survey or research study explained to you.
  5. Ask for the name and contact information of someone to contact if you have additional questions and/or if you wanted to receive additional information about the survey or research study.
  6. Have the potential risks associated with the survey or research study explained to you.
  7. Have the potential benefits associated with the survey or research study explained to you.
  8. Check for a statement in the consent form that explains how the data will be used, if the data will remain confidential, and that reasonable efforts will be taken to keep your identity private.
  9. Check for a statement in the consent form that explains how participating the survey or research study is voluntary and that refusal to participate does result in a penalty.

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*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.

 

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