Hemolytic Anemia

OPPORTUNITY FOR PEOPLE WITH WARM AUTOIMMUNE HEMOLYTIC ANEMIA (wAIHA) TO PARTICIPATE IN AN INTERVIEW PROJECT

Global Patients is collaborating on a research project to better understand the experience of living with warm Autoimmune Hemolytic Anemia (wAIHA). The research project is being conducted with IQVIATM, a healthcare research firm (www.iqvia.com), and a pharmaceutical company that is working on developing therapies for patients with wAIHA.

We are seeking individuals diagnosed with wAIHA who are aged 18 years or older.

The research will involve individuals diagnosed with wAIHA participating in a telephone interview lasting approximately 75 minutes. In appreciation of the time required, we are offering $200 to compensate participants for their time.

The purpose of the project is to understand individuals’ experience living with wAIHA and get feedback from individuals diagnosed with wAIHA on some questionnaires that are often used to assess wAIHA in diagnosed individuals. These questionnaires aim to provide researchers and clinicians with an understanding of people’s experiences of living with wAIHA.

If you are interested in participating and are eligible you will not be asked to complete the questionnaires. Instead, we would like to get your perspectives on whether the questions in each of the questionnaires are relevant to your experience with wAIHA, comprehensive, and easy to understand. Your input will help to ensure the questionnaires are suitable for use in future clinical trials to more accurately capture experiences of people living with wAIHA.

The project is strictly for research purposes; there will be absolutely no sales nor promotional activities.

Prior to the interview, IQVIA will ask you to obtain confirmation of your wAIHA diagnosis from your physician or staff at your physician’s office. This information will help us confirm your eligibility for this project.

If you are interested in participating in the project, or have any questions, please contact us at rebeca@global-patients.com

Many thanks for your time and consideration!

#Lupus

#Anemia #Research #PAIDSTUDIES

I was diagnosed with UC when I was11, Ankylosing Spondylitis at 13,and hemolytic anemia when I was 19, I’m now 22. I’ve also had many episodes of depression and suffer from panic attacks. Since I’ve been sick for the majority of my life, I feel like I’ve learned a lot about myself especially like how resilient and strong I am.
Something I have been dealing with is guilt for not doing as much as I want to. Because of my body constantly attaching itself , I’m tired a lot. I feel like basic things like running errands cause me to become drained. I want to be able to get up early, exercise, run errands, practise my sign language that I’m currently trying to learn, and whatever else I want to , but I’m so tired. I can barely get through two of those things before I feel like I need to lay down for the day. I feel guilt because while I’m not healthy, I’m not on my death bed and I feel like I should be able to do more.
Does anyone else experience guilt for not being able to do all that you want to? Should I be pushing myself to do all that I want to and hope that my body learns to keep up with the pace I’m setting?
#UlcerativeColitis #ChronicIllness #AnkylosingSpondylitis #MentalHealth

Let me start by saying I want to be here. I’ve got so much to be here for and I’m grateful everyday for those things. Now let me say, I’m so tired. I’m tired of being sick. I’m tired of fighting the fatigue, the depression, the pain. I’m tired of fighting all these invisible battles. I’m tired of feeling like a burden. I’m tired of feeling as though my family would be better off without me. Sometimes I just want to give up. I don’t want to die. I just don’t always know how to keep going.

Ok now I can take a few deep breaths and carry on.

Has anybody ever had a family member or loved one that seems to thrive on your illness? I have a loved one that seems to get some sort of fulfillment out of being around me while I’m ill. Legitimately this person has been of some help in my harder times. But this person also goes around telling everyone that’ll listen about my health issues. It’s like they’re just “helping” for attention. Is there such a thing as a martyr complex?

Wow what a wild spring break I had.
Started with needing emergency surgery surgery went well unfortunately I got extremely bad pneumonia and had to be intubated for three days. My body couldn’t survive without this because my lungs couldn’t get oxygen and my heat was so weak that I couldn’t move blood right. After a week in the hospital I was released. As many of you know I have an anemia problem called autoimmune hemolytic anima. This means that my own body fights and destroy healthy red cells. I am currently in the hospital now for 8 days so far during this stay I when from a hemoglobin of 5.7-3.1-6.7 I need to be at a normal 12 to leave. I have received 6 units of blood to keep me stable and today will be my second dose of chemotherapy. After they we are hoping my body begins to respond and go back to normal function. I happy to get a purple power port on Monday but I is very much dependent on my test