Warrior StoriesFrom fellow wAIHA Warriors

Living with a rare condition, such as wAIHA, can be a lonely experience.

Finding a space to share your own, can help. This space is for all of our wAIHA Warriors who want to use their voices to connect with and empower their community.
The recovery process has been challenging, and like a roller coaster ride.  My faith, the love and support of my family and friends, as well as sharing my story via social media, has helped me get through one of the most difficult, and scariest times of my life.  My hope in sharing my story, is to bring awareness to this condition, as well as let anyone else know that goes through this, that they are not alone.  
-Denee B.

My name is Denee’, and I am a 45 year old Mom to amazing twin boys.  In March of 2020, I was diagnosed with a rare disease called Common Variable Immune Deficiency (CVID), which is genetic in origin.  Once I wrapped my head around what that meant, especially during a pandemic, and getting my treatments started, all seemed to be going quite well.  

Fast forward to December, and I was struck with yet another rare disease.  Things had been going along smoothly for my family and I, despite the challenges of the current climate.  On Saturday, December 12, I happened to notice that my urine was dark, and odd in color.  I assumed that perhaps I hadn’t been drinking enough water (which is not my norm), and made it a point to do a better job of hydrating myself.  The next day, I woke up not feeling well.  I was very fatigued, and also having some gastric issues.  This was not uncommon for me, as I have several food intolerances, and extreme fatigue with CVID is very common. 

So, I just took it in stride, rested and hydrated, and didn’t give it much thought.  However, my urine was still dark and discolored, even with adequate hydration, which concerned me.  

When I woke up Monday morning, as I was getting ready to go to an appointment, I noticed that I looked a little jaundiced!  That had never happened to me before, so it was at that point that I became very worried, and made an appointment to see my primary care doctor that afternoon. 

My doctor called me that evening with my lab results, and told me that I needed to go to the emergency room.  My bilirubin was elevated above normal, my hemoglobin was down to 9, as well as elevated liver enzymes and LDH, all of which were very out of the norm for me.  I was admitted to the hospital that night, and they initially suspected my gallbladder, or possible internal bleeding.  

As it turned out, my gallbladder is somewhat problematic, but it didn’t answer why my hemoglobin continued to drop.  Happily, my attending physician knew to consult a hematologist, and she knew what to look for.  It was on the third day of my stay that I was diagnosed with Warm Autoimmune Hemolytic Anemia (wAIHA), and I had tested Coombs positive.  The moment they knew, they began treating me with high dose steroids. 

However, it also took giving me 5 days worth of IVIG to stop the hemolysis, in addition to the steroids, as well as folic acid, and B12 shots.  I couldn’t get over how quickly things had progressed, how terribly weak I had become, and how awful I felt.  I had terrible headaches, nausea, and my heart rate would go so high with very little activity.I was in the hospital for one week, unable to have any visitors because of the pandemic.  It was such a scary time for me.  During that time, my hemoglobin had dropped to 5.6 on two separate occasions, and I ended up needing 7 units of blood.  I was discharged home on the 22nd, just in time for Christmas with my family.  I continued with oral steroids, folic acid, and B12 shots.  After one failed attempt to wean from the steroids, I can now happily say that after a second attempt, I am in remission from the wAIHA.

Immediately after my doctor gave me my diagnosis, she told me to go on line to research and read about my rare disease, as it is so important to understand what is going on with our body, and to be able to self advocate.

During my searches, I came upon a wonderful support group, called wAIHA Warriors.  I was thrilled!  I contacted them soon after, sharing my story, and they reached right back out to me.  It was so comforting to know that I wasn’t alone.  I have since had the pleasure of a Zoom meeting with two people from the group, and I am forever grateful for their support.

Going through this was one of the scariest experiences I have ever had in my life.  Initially when I was in the hospital, there was part of me that wondered if I was going to die, before I had my diagnosis.  I knew how sick I was, and not knowing why was frightening.  I was so afraid I wouldn’t see my husband, or boys again, and I prayed that I would be ok.  Once my hematologist explained my diagnosis to me, and the treatment, I was somewhat relieved. 

The recovery process has been challenging, and like a roller coaster ride.  My faith, the love and support of my family and friends, as well as sharing my story via social media, has helped me get through one of the most difficult, and scariest times of my life.  My hope in sharing my story, is to bring awareness to this condition, as well as let anyone else know that goes through this, that they are not alone.  

Read more
Being diagnosed with wAIHA was scary, but it helped me prove my 22 year battle of whether I have lupus or not.
- Vickie P.

Being diagnosed with wAIHA was scary, but it helped me prove my 22 year battle of whether I have lupus or not. I found out last year on January 7, 2019 when I was rushed to the hospital with one bag of blood from dying and multiple organ damage.

I have been fighting with doctors about the diagnosis of lupus for 22 years. Some doctors say I have lupus when I am in the hospital with bleeding issues, blood clots, and mini strokes. Then later they say I don't have lupus and never did.I was finally diagnosed with the label 'other lupus', the kind that attacks your blood and causes ITP (immune thrombocytopenic, purpura), HIT (heparin-induced thrombocytopenia), autoimmune hemolytic anemia, antiphospholipid then attacks your nervous system and causes mini strokes, migraine, hearing loss, vision issues, pots, then your GI and causes mesenteric lymphadenitis, then causes high levels of blood and protein in the urine as well as an inflamed liver, enlarged spleen, Sjorgen’s syndrome, and heart issues.I guess my not so good diagnosis was actually good in that case.

I did have to take oral prednisone, IV steroid, IVIG, 6 bags of blood, and 4 treatments of Rituxan to get out of the danger zone. I never had the lupus malar rash which made my diagnosis questionable for many years. I always get the positive ANA (Antinuclear Antibody) after I leave the hospital when I am sick.

Read more
I had some blood transfusions and was sent home with a high dose prednisone prescription that over the months was tapered down to 10mg, then I relapsed, had two more transfusions I think, went back to high doses and now I'm down to 5mg for one more week and then I'm off prednisone and supposedly in remission.
- Dustin B.

Being diagnosed with wAIHA was scary, but it helped me prove my 22 year battle of whether I have lupus or not. I found out last year on January 7, 2019 when I was rushed to the hospital with one bag of blood from dying and multiple organ damage.

I have been fighting with doctors about the diagnosis of lupus for 22 years. Some doctors say I have lupus when I am in the hospital with bleeding issues, blood clots, and mini strokes. Then later they say I don't have lupus and never did.I was finally diagnosed with the label 'other lupus', the kind that attacks your blood and causes ITP (immune thrombocytopenic, purpura), HIT (heparin-induced thrombocytopenia), autoimmune hemolytic anemia, antiphospholipid then attacks your nervous system and causes mini strokes, migraine, hearing loss, vision issues, pots, then your GI and causes mesenteric lymphadenitis, then causes high levels of blood and protein in the urine as well as an inflamed liver, enlarged spleen, Sjorgen’s syndrome, and heart issues.I guess my not so good diagnosis was actually good in that case.

I did have to take oral prednisone, IV steroid, IVIG, 6 bags of blood, and 4 treatments of Rituxan to get out of the danger zone. I never had the lupus malar rash which made my diagnosis questionable for many years. I always get the positive ANA (Antinuclear Antibody) after I leave the hospital when I am sick.

Read more
Share your story
Grieving
+ support group
Staying safe and healthy is key!
It is important to get enough rest, take deep breaths, and meditate.

Stay in touch

See inspiring stories, photos, and videos in our Warriors monthly newsletter.
Thank you! Your submission has been received!
Oops! Something went wrong while submitting the form.

We are wAIHA Warriors.

Warm Autoimmune Hemolytic Anemia (wAIHA) is a rare autoimmune condition. Many people who have other autoimmune diseases may not even know they have it, and it’s often difficult to diagnose.  

This community has been built so that you can share your experiences, find others with similar journeys, and bring as many resources as possible – all in one place.  

Learn more