anemia

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    PAID STUDY IN THE US

    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

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    Desolation and Hollowness

    #Emptiness #Emptiness

    When my depression gets extremely severe I feel this deep sense of hollowness inside and complete desolation takes a hold of my life. For a very long time I had no idea what to do other than let it overtake me as long as it did. I had mental illnesses before my physical ones but I was unaware since I was so young. I got Inflammatory Bowel Disease when I was 20 and diagnosed with Ulcerative Colitis. Now my GI doctor at the Mayo Clinic says I have Crohn's disease. Anyway, this disease brought out the depression and anxiety a great deal so I believed it was the cause. However just recently, I was told I had Complex PTSD and so many things made sense, and the fact that I thought about suicide when I was in 4th grade and tried it horribly but luckily badly my Junior year in High School definitely demonstrates that I had mental illnesses back when I was school age. To me, it was just a logical way to deal with wanting to leave my house because I couldn't deal with my mother's abuse any longer. And wrongly, I thought if something happened to me she would care more. I tried to go back to school but kept ending up in the hospital so I was always filled depression and just having the disease gave me great anxiety. I was so bad they often had to almost sedate me with high doses of IV Ativan. My dad had died six months before I got sick and he was the only person I knew loved me, and my getting sick proved my mother and both my older brothers could not care less, since they abandoned me and left my care to my boyfriend of 2 years, and never came to visit except once. I never was able to graduate, not for a long time.And that was a sense of shame and feeling of unworthiness that filled my life as well.There's a lot more to the story, but I don't want this to be that long. But the loss of my father was an incredibly huge impact on my life in a negative way since I never and still really don't know how to deal with death and grief, and it brought back 2 years ago when I lost an extremely close Uncle of mine to AIDS, both were way too young to die; and their deaths left me with an emptiness that beat all other types of hollowness that have occurred throughout my life. I pretty much think of them every day and just wish they were still alive and with me. I believe the grief I carry from them and now a few others often is one of the main root causes of my depression, and makes me feel the complete desolation around me and complete emptiness inside. Thankfully I have a couple of very supportive people who do their best to help me through it, which means a lot, but sometimes the deep depression just has to run it's course throughout me.

    #Emptiness #Depression #Anxiety #Shame #complexposttraumaticstressdiso rder, #CPTSD  #Grief #IBD #inflammatorybowel disease #CrohnsDisease #UlcerativeColitis #ChronicPain #sexualassualt #Anemia #RheumatoidArthritis  #Osteoporosis #Insomnia #ChronicIllness #Disability #MentalHealth #MightyTogether

    2 comments
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    Chronic Pain & Passions

    I am recovering from severe anemia due to PCOS, and since then I’ve dealt with chronic pain in my back,legs and knees. I’ve had chronic pain for years buts it’s gotten worse and I’m still being tested for a couple of autoimmune diseases.

    With all of this happening, I’ve had to stop doing what I love and am very passionate about because everything is unmanaged.
    With those who struggle with chronic illness, how do you keep doing the things you’re passionate about. The things that create joy in your life? It’s really affecting me not being able to do the things I like. #ChronicPain #AutoimmuneDisease #PolycysticOvarySyndrome #AnkylosingSpondylitis #Anemia #MentalHealth

    6 comments
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    Iron deficiency anemia with no explanation

    For over 2 years I’ve been receiving iv iron and blood transfusions to keep my hemoglobin between 7-9
    Drs have run all kinds of blood tests bone marrow etc
    They can’t figure out why I can absorb iron and produce red blood cells
    Any one similar
    #irondeficiencysnemia #Anemia
    #unexplained

    10 comments
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    Frustrated

    I need to vent to people that get it. My pain has been horrible recently on top of other issues I’ve been dealing with. So, I was being tested for celiac and the blood test came back negative…I’m waiting for the sample results to come back. The doctor has already said he wants to do a colonoscopy because of my anemia. This same man did a colonoscopy a year ago. I’ve already had one major stomach surgery. I had such a large hiatal hernia, that my stomach was in my chest. So I’m used to being poked and prodded. I’m frustrated with having to schedule another colonoscopy. I’m 33 and this is the 3rd one I’ve had. I’m losing it over here. I just want answers. #IrritableBowelSyndromeIBS #Anemia #NissenFundoplication #Stomach

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    Sorry I have been away!

    Ugh #HeartCondition problems! My 13 year old is currently in the middle of a #flare up with his #pericarditis and my 8 year of had a bad #nosebleed Friday night so she is now on iron with the hope of not developing #Anemia ! the fun never stops around here!!! we are doing ok though as always we #JustKeepSwimming

    1 comment
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    Emptionally Numb #Anemia

    Who's the unlucky person that gets an anaphylactic reaction after an iron infusion. Me that's who. It was a severe allergic reaction that caused difficulty breathing, chest pain, rash, and severe itching.

    I had it all planned out,
    1. Get IV.
    2. Get lab work done,
    3. Get Iron infusion
    4. Get Inflectra infusion.
    5. Go home and start to feel better.

    Fu#*ing body just doesn't want to follow the plan. Seems the plan includes hanging out with Mr. Sharp Belly Pain for who knows how long and starting Prednisone again.

    Emotionally numb. #IronDeficiencyAnemia

    1 comment
    Post

    Emotionally Numb

    Who's the unlucky person that gets an anaphylactic reaction after an iron infusion. Me that's who. It was a severe allergic reaction that caused difficulty breathing, chest pain, rash, and severe itching.

    I had it all planned out,
    1. Get IV.
    2. Get lab work done,
    3. Get Iron infusion
    4. Get Inflectra infusion.
    5. Go home and start to feel better.

    Fu#*ing body just doesn't want to follow the plan. Seems the plan includes hanging out with Mr. Sharp Belly Pain for who knows how long and starting Prednisone again.

    Emotionally numb. #Infusion #IBD #Anemia #CrohnsDisease #ChronicIllness

    1 comment
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    Feeling trapped by pain, no relief options.

    TW: #ChronicPain #Anxiety #SuicidalIdeation #Vent

    I’ve lived with chronic pain all my life. Diagnosed with #ChronicMigraines at 6, #TemporomandibularJointDisorders at 14, #PsoriaticArthritis in all joints at 28, #Fibromyalgia at 29, #PolycysticOvarySyndrome at 30, #Cancer at 39, #ChemotherapyinducedPeripheralNeuropathy at 40. And countless other diagnosis along the way like #Asthma , #Diabetes , #sjogrens , #PosturalOrthostaticTachycardiaSyndrome , #Cardiomyopathy , #CongestiveHeartFailure , #Anemia . All while dealing with #CPTSD , #MajorDepression , #ObsessiveCompulsiveDisorder , #DomesticAbuse , #ChildhoodSexualAbuse , #MedicalTrauma .

    I’ve been in and out of hospital for both the cancer and my heart lately. The bile duct liver cancer is responding to chemo however due to a port that needs replacement and having been in hospital, I’ve not had chemo in a month. So it’ll be starting back up soon. I’m mixed about it, on the one hand what was meant to be palliative had turned out to be curative so that’s amazing. On the other hand the sickness and pain of chemo this time will suck because no meds!

    No meds? Yes, no pain meds or pain management anything aside from “a” Tylenol if I really need it, not the prescription kind. Earlier this month while in hospital for my heart they decided 90% of the meds I was on were “heart toxic”, including my mental health meds and pain meds. So they had me cold turkey all of those and I can’t go back on them because they’re trying to give my heart a chance to improve and heal with the help of heart meds and off the meds that were bad for my heart. As well as lifestyle changes. My ejection fraction is 20-25% since April. They think it stemmed from a virus or infection and usually that heals within 6 months but the meds + weakness from chemo (my chemo meds don’t affect the heart itself) were not allowing it to heal. So now no pain meds, no pain preventing meds. No mental health meds aside from a Xanex to use in emergencies but can’t be mixed with or taken near my heart meds. Which means I can’t ever use it because I take heart meds 3x day.

    Now I’m having pain flares of everything at once because no chemo for a while means my immune system is awake again and overreacting to literally all the things. I know pain, I’ve lived all my life with it and I have a high threshold for it. But I’ve never had to live with it in all its fury and all at once without help for any of it. The full pain with my untreated anxiety has led to almost nightly severe panic attacks at night because the severity of the pain keeps me from being able to sleep. I’m also freaking out at the thought of having to do chemo with no side effect help.

    The intense pain/anxiety combo is throwing me deep in depression again and bringing back all the thoughts of ending things. It’s just so much to deal with at once, losing hope so quickly.

    Thank you for letting me vent & for any support!

    6 comments