Patient Stories

It was a big deal for me to not feel like myself. I just wanted to rest all the time. I'm like this is not who I am. My name is Duffy, I live in Baltimore, Maryland. I'm married to the man of my dreams for 40 years.

I have run 4 half marathons. I work out every day that I possibly can. And I've had a very active life that has been wonderful. In November of 2017, I was not feeling normal, so I saw my internist and that was when she started a series of blood tests and called me that night and said, "Duffy something is seriously wrong."

After that there were a series of more visits to the doctor and more blood tests over and over again. I also was diagnosed 5 months later with something called Cold Agglutinin Disease which none of the doctors in Maryland had ever heard of. That was the scariest part.

I was breathless walking up a flight of stairs. I didn't want to walk outside anymore because I thought, you know something is clearly wrong. And was just devastated that I no longer had the energy to do what I loved the most.

My daughter got engaged. The most exciting city that we were going to was Luca, Italy where she and her husband have this adventurous dream to get married and travel the world. The checklist and the translations of putting together a wedding in Italy were daunting to me and then I get this diagnosis. I'm thinking, "Am I going to be well enough to travel to Italy? What if something happens over there and nobody knows what this disease is or how to treat it? What's it going to be like?" But I'm very grateful that we walked her down the aisle. It was so wonderful. We were there, but I was not feeling well.

I was still cold and breathless although it was in May and the weather was fairly warm. We came back and my husband and I said, "We probably need to listen to what the doctor said, which is move to a warmer climate." We took to the internet, my husband and I, and researched over and over and over and over again what might work for people with Cold Agglutinin Disease. And that's where we learned about ENJAYMO. I was just really reluctant. I was afraid to start anything new. I just, I was afraid. I can't put it any other way. You know, I've never had to go through a health crisis and I felt like I was in crisis. I had a husband and a daughter who consistently kept saying, "Consider it, Mom what have you got to lose?" I had read the description of all of the side effects before I started taking ENJAYMO and that was a turning point for me. Where I said, "Okay, let's give it a try."

I found a wonderful doctor who really really understood Cold Agglutinin Disease like nobody else, I got the 5 vaccinations that were required beforehand and I said, "Let's just roll." And I've never looked back since. Not once.

So I had my first infusion, I'll never forget it. It was like one of the greatest moments of my life. I'd chosen to make a decision and that was really big. Just making a decision. I came back and they were measuring my hemoglobin and it went from what I called the crazy 8s, and now after being on ENJAYMO, my hemoglobin is consistently at 14. Once I started ENJAYMO, it all started to come back, and it came back with a vegeance in many ways. So I'm really very grateful that that has happened. I feel amazing. I'm able to do just about anything I want to do. I do take staying warm very seriously because my fingers, my nose, and sometimes my toes turn bluish-purple. That is from the Cold Agglutinin Disease, it's not from the ENJAYMO. I could walk up 13 steps without being out of air. It was wonderful. We travel a lot and I have been able to manage this every 2-week cycle of getting my infusions. I thought that was huge obstacle, but once you control it and manage it, it worked. I was going to a hospital to get my infusions initially, and now, if you can believe this, this past June, I started getting home infusions.

There are so many things that I have learned. First of all, you have to be an advocate for yourself in the health system. Even having, I mean, I saw 4 doctors and 5 months later got a diagnosis. The second thing I'd say is you have to surround yourself with family and friends. That's made all the difference in the world for me, is having people to support you during a health crisis. You have to have people that are by your side and I'm so grateful that I have both family, friends and you know, my doctor has just been incredible to have the support.

So I've talked a lot about my experience, but honestly, it's my experience and yours may be different. And I would encourage anybody to start with talking to your doctor and find the right doctor that knows about CAD and be sure and advocate for yourself.

I believe in the power of positive thinking. However much you convince yourself that something could not possibly happen, the smallest little thing can mean amazing things in your life.

My name is Helen, was born and raised rural southern girl. I ended up in New York City in a college work program for the summer. It was amazing. We had such a good time. And I love the fact there were always unique things to do. It was just a fascinating place. It was very much the ability to be somewhere where nobody knew you. And I loved it. So I stayed.

My diagnosis happened in approximately 3 months. I was suffering from another disease and it required me to have a blood test monthly. And they would take the blood and it would go to the lab and the doctor would call me the next week. I'd had one the night before and he called me the next day panicked because it showed me as extremely anemic. So he decided he wanted to do a week's worth of research, he said, and would I come back in a week and he would tell me what it was. And when I went back, I had a diagnosis of CAD.

I was kind of in shock. I know it sounds crazy, but my first reaction was, "Couldn't I have something people recognized? Why do I have something nobody's ever heard of in the world?" Things that had been a joy became a chore. Instead of being comfortable in normal temperatures, I started being colder than everybody else in the room. My energy level was pretty bad. When I first went to New York, I ran some, I would walk miles. Just the everyday living became harder to accomplish in the manner in which I had been used to living in New York usually have a small space, and my space was not a closet exactly. It was probably 600 square feet or a little more.

It started getting to the point where I was lucky if I got the house cleaned. I ended up being a lot more solitary than I had previously been. It was frustrating. I'm a very independent person and it was like my body was telling me it was in control and not me. The frustration that you feel because you have to do something for your health is short-lived because you have to do it and you just keep on keeping on. My doctor said to me, I was about 63, and he said, "So where are you moving when you retire?" And I said," Nowhere? I hadn't planned on moving at all." And he said, "Yes, you are." He said, "You need to get out of cold weather." So packed up my bags when I retired and headed out. What goes around comes around.

Left the south, went right back when I got to Texas, I was still experiencing the same symptoms. As a matter of fact, I was a little worse off than I was in my last days in New York. My first reaction to hearing that ENJAYMO existed and there was a treatment for this disease was shock. I was very interested. My doctor explained it in the side effects and that he felt it was a good option for me. And I had exhausted, as far as I know, to that point, every treatment option. So I was extremely happy and told him, "By all means, bring it on." And here I am, very happy to be here and speaking to my doctor.

Before I started ENJAYMO, one of the things I had to do was have vaccinations. There were 5, I believe. I felt the difference. It was unexpected. My hemoglobin numbers rose into 212 and they have remained between 10 and 12 consistently. Most profound improvement I have found is that, I can't say that I wake up energetic, but the improvement in my energy level is there. I have an easier time breathing. The recovery time from any action I take is less than if, I don't know, if I mop the floor, instead of 2 hours of recovery time from that action, it may be 20 minutes. It's a wonderful improvement.

The experience I've had within ENJAYMO and life is my experience. I didn't expect ENJAYMO and I had no hopes at all of a treatment ever being forthcoming. And when it did, I was severely blessed and happy to see it. Don't let it take your life away. You need to advocate for yourself, but always keep a positive attitude.

I think maybe if I had known somebody who had cold agglutinin disease that would have encouraged me and they could say, 'Oh I know where you are, but you can feel better, you can do things, you just need to take care of yourself do anything that you and your physician think will help.'

My name is Gloria and you've heard of me. If you go to church, especially during the holidays, it's all about me. It's boundless what all I can do and what I'm known for.

I live in Georgia with my Pomeranian bear. And I love to read, love to visit with family and friends, and travel, especially to the beach

Another kind of fame I have is that I have cold agglutinin disease and I'm on ENJAYMO and I'm being compensated for coming and speaking to you about my experiences with cold agglutinin disease and ENJAYMO. Prior to knowing that I had CAD, my background was as the nurse practitioner in family health, but I dealt mainly with adults. And my husband had Alzheimer's and Parkinson's disease and not doing well. I would have somebody come and stay with him while I worked, but then when I came home it was all on me.

Anything practically that required any exertion was suddenly very difficult and made me feel like getting out of bed was like, 'OK I've done my job for the day,' just because I had no energy. Stuff that I normally did with not even thinking about it, such as taking my dog out for a walk. I would climb a slight hill with him and be short of breath. My heart would be having palpitations. I was experiencing these symptoms about three months before my diagnosis, but as I said it was all, in my mind, stress related.

When I went to my primary care, it was just time for a regular checkup and I just happened to mention to him, "Oh yeah I've been more tired than usual." And he checked my blood counts at that time and said, "Oh you're a little anemic." And so then I thought oh OK at my age, anemia, I may have cancer. And he said, "Well we'll do some more blood tests," and we did and everything else was normal. So that's when he referred me to hematologist oncologist. And that's when I really got to thinking 'Oh, this probably isn't just stress.'

The day I found out I had cold agglutinin disease, my husband died. So, in a way, I was not in a good place. So it was sort of like, oh well so I�ll die too. I won't have to live without him, I'll be dying. But the more research I did, I found out that wasn't the case � that it wasn't necessarily a life ending disease, it would change my life. I never had a patient with cold agglutinin. I had heard of it, I remember in nursing school, but it was sort of like 'Oh yeah, there's this.' Having a medical knowledge helped me understand the medical websites that I would go to. The first treatment we tried prior to ENJAYMO was not approved for cold agglutinin disease but had shown some efficacy in treating it. Unfortunately, it did absolutely nothing, my hemoglobin kept dropping. I began to feel a little hopeless even though I tried not to. It was sort of like, well is there anything out there that might help me?

When my doctor mentioned ENJAYMO to me and he had told me the side effects and everything he goes, "Would you want to try it?" And I had read all the literature and knew that it had a fairly decent rate of response. Not only did they mention all the side effects that were possible, he also told me that there were some immunizations I would need prior to starting. So I was like all in. I was like, let's do it, I'm ready for this. As I've been on ENJAYMO, my hemoglobin as of a week ago was 14.2. For the past six months at least, it is ranged between 13-14, which is perfectly normal. I have the energy I had before. I can do what I want to do when I want to do it.

When I went out to New Zealand to see my son and his wife, they were very concerned about saving my energy and doing this. And so one day we went out to eat at night we walk my son goes, "Mom, you don't have to speed walk!" because they were expecting me to be so lethargic. I love seeing their surprise at me keeping up with them. Because I would go walking with their rottweiler and we would go three mile walk and I'm just trucking along.

I stay on ENJAYMO because I have my energy back, I feel like I have my life back, and the thought of going backwards to where I felt before is not an option for me. This has been my experience with ENJAYMO, and yours may be different. There are still things in life I enjoy, and I can do, and cold agglutinin disease won't stop me, and it hasn't stopped me.