I am Danielle, age 25 from Biringham, England. My story starts in October 2009.
I was always tired and quite moody, if you like, as I’m sure my family would back up. I had no energy for my two young daughters and I had no real help. As a result of this, my eldest daughter’s schooling sometimes suffered as I was usually in bed by around 6 pm and at 7 am, when it was time to get up, I would find it almost impossible to get out of bed.
Doctors said that I had depression and since I knew that I did not, I changed doctors so many times to try and get some answers. I knew something was very very wrong!
I told my latest doctor that I had severe headaches, always felt tired and was pale and yellow. The nurse from the surgery took my blood and when results came through asked if I was a drinker but at the time gave me no explanation as to why she asked this. I have since been told by my hospital consultant that it was due to the size of my blood platelets being three times bigger then they should be.
One day, I had just had enough of feeling the way I was and went to the surgery and begged the doctor on duty to do something as I felt as if I was dying. He listened to my symptoms and sent me for blood tests. My results couldn’t be read because the sample had clotted as soon as it was taken. But once I eventually got the results it sparked a huge reaction and I had people from the medical profession turn up at my house at around 10 pm at night to tell me I needed to get right to my doctor as my hemoglobin was 5.8.
I was still messed around with and given b12 injections that I did not need. Not once did anyone suggest that I go to hospital but eventually I called an ambulance and admitted myself as I could no longer take feeling how I did. I was given 4 bags of blood. I truly believe the transfusions saved me in the short run as I felt so much better after I had had them which gave me a bit of hope. I was in hospital around 10 days but decided to go home and be treated as an outpatient.
I was misdiagnosed and at times told nothing. I even demanded a bone marrow test as I was convinced I had cancer because my symptoms were similar to those of some of the cancer patients on the ward. I think that bmb (bone marrow biopsy) was one of the worst things that happened as it was so scary. The results showed that my bone marrow was working in overdrive which was a good sign as it was working and gave the medical team more insight as to what it could actually be. By mid 2010, I was told I had AIHA (autoimmune hemolytic anemia) and then even later that I had cold agglutinin disease. The only reason they found I had CAD is because every time my blood was taken, it clotted which sparked further investigations.
The worse thing for me about all of this is that my doctors are baffled as to why I have AIHA at all. They have run every test they can think of. I have never had mycoplasma pneumonia, cancer, or any of the obvious reasons to have AIHA. The drugs to help keep my condition at bay until they could figure out what to do was prednisone 70mg per day which was, for me, a massive dose. Although I’m off the med now, I still struggle with the amount of weight I gained.
As I am only 25, they would not give me rituxan or chemo that can help reduce the rate that I was killing my blood cells because the available meds could cause liver damage and would mean I couldn’t have any more children. My only option was to have my spleen removed as it was enlarged as well as not doing its job. They said that they could only hope it would slow the process down as they think that my blood may have been destroyed in my spleen. Actually what the splenectomy did was to prevent the destruction process from happening. I have apparently amazed doctors with this again.
I still struggle on a day to day basis with CAD as the only real form of information I have been given is from this site. I still suffer from headaches on a regular basis and I have sadly had 3 miscarriages in 5 months. I would be very interested to find out if anyone has ever carried a baby whilst having this condition. My doctors are running more tests at present to try and determine why the miscarriages have occurred and I really hope that it isn’t due to my condition. When I have my bloods done I have to have the tests at the path lab as my blood clots straight away and a flask does not work either.
I worry that my children will get it too. One thing I will say is that having my spleen removed gave me back a quality of life that I was missing out on. Although I am at greater risk of getting things now since my immune system is so low, with the right antibiotics it can work out well. My blood count is currently around 12 and slowly creeping back up. I have an appointment the end of jan 2011 so I will keep you all updated, thanks for taking time to read my story.
My name is Noel, and I live in Kingston Jamaica.
In late 1996 at age 54 I learned I had CAD as a result of a routine medical examination that showed confusing blood test results. My doctor asked for repeat samples and when they came back with seemingly strange parameters, she referred me to a consultant hematologist who was attached to the national Blood Bank.
Having read of the many cases of misdiagnoses on your website, I consider myself very fortunate that my hematologist Dr. Grace Haynes (now retired), immediately suspected CAD; Hb of 13.8 and positive Direct Coombs test. In a follow up visit, she confirmed CAD and put me on 5mg of Folic acid daily, and had me do monthly blood tests while tracking the course of the disease. She explained to the technicians in the laboratory how to deal with my blood samples, and I quickly became a minor celebrity amongst the laboratory technician crowd, who pointed me out to any of their new members… I once overheard one technician describing me to his colleague as “the man with the science fiction blood”.
I visited the Emory Clinic in Atlanta early in 1997 and had some further tests done. The titer of the antibody was 2048, however there was still activity at 30°C, thereby causing mild anemia despite the relatively low level of antibody in the blood. A bone marrow biopsy was also done, and did not show any evidence of lymphoma.
The specialists at Emory were very complimentary of my hematologist in Jamaica, where as far as I am aware, I am still the only reported case of CAD.
I had previously lived in Canada for a number of years with no difficulty whatsoever, and it is fortunate that it was only after I returned to live in Jamaica that the CAD developed. Although I now live in a warm climate, I am careful to have a coat and undershirt with me at all times, as the low temperatures within the various air conditioned buildings, sometimes cause my fingers and toes to turn blue and become numb. I also have to avoid ice cream and other cold foodstuffs that one normally enjoys in a warm climate.
During 2002 my Hb inexplicably fell to 9.7 accompanied by headaches and feelings of lethargy. My doctor put me on Prednisone and Chlorambucil, which turned my fingernails and toenails black. Over time the Hb gradually increased to around 11.0.
In 2007 I suffered from prostatitis and started passing dark red urine due to the hemolysis. I spent two weeks in hospital during which time my hemoglobin count dropped to 7.0. The internist worked along with my hematologist and I eventually overcame that episode without being transfused. I have since had various infections including lower respiratory tract and cellulitis, and each episode has been accompanied by a lowered Hb count.
In 2006 after some strenuous physical exercise I was told that I started acting strangely and repeatedly asked the same questions. I do not recall that experience which I am told lasted for about 2 hours, and the neurologist that treated me subsequently diagnosed Transient Global Amnesia (TGA).
On learning that I had CAD, he wondered if there might be any connection with the TGA, which is apparently triggered by an insufficiency of oxygen to certain parts of the brain. Both conditions are extremely rare, and there is nothing in the literature that connects the two.
In 2009 again after exercising I experienced another bout of TGA in the gym. TGA can be very disconcerting for those who witness it, but fortunately the sufferer recalls nothing of the episode. My neurologist strongly suspects there is a connection between CAD and TGA, but so far I am a sample of only one.
If any CADdys also suffer from TGA, you can respond to me at Click here to send an email as I am sure my neurologist would like to hear about you.
My hemoglobin count currently fluctuates around 12.1 and I have learned how to live a fairly normal life with my anemia. One of the things I have learned, and wish to pass on to other CADdys is that you will probably know more about your condition than most medical practitioners, as you have to live with it every day and have likely researched it more. Don’t be intimidated or put off by skeptical doctors, nurses and lab technicians, and be proactive in letting them know that you are literally ‘one in a million’. Whenever I have to deal with a new medical practitioner I usually start by enquiring if they know about CAD, and then go on to tell them that I present probably the only case they will experience in their entire career. This usually gets their attention, and makes them more likely to listen to you when you advise them how to treat with blood sampling and other related issues.
I close by paying tribute to the organizers of this website.
When I first learned I had CAD, I had the very frightening feeling that I was all alone in the world with this strange disease. The website is a great source of information and I find the stories both comforting and inspiring.
Keep up the good work and please continue updating the website.
My name is Darlene and I have been recently diagnosed with Chronic Benign Cold Agglutinin Disease precipitated by M. pneumonia and Epstein Barr Virus infection.
The only symptoms I had were a slight difficulty in swallowing, occasional coughing, and tiredness which I attributed to getting older. I’m now 71, which is a peak discovery age for CAD. Purple spots on my cheeks (which later disappeared) had been pointed out to me a couple of times in the past, but I didn’t relate that to anything. When facing cataract surgery in January, I needed to have a pre-op blood test and, at that time, autoimmune hemolytic anemia was discovered at a level of 11.6. A year prior, my blood had clumped during an annual physical’s blood test, but it was attributed to a reaction to the vial. After a visit to a hematologist and many blood tests, the diagnosis was made. My titer level is 1:64.
Investigating CAD on the internet has provided me with much information—some anxiety producing and some comforting. This CAD support site has been especially helpful. I love reading the stories of people who share in this affliction. It seems as though so many are active, outdoor people and quite a few live in cold climate areas like I do. I am very interested to hear about what modifications people have made in their lives to live in a satisfying manner, safely accommodating CAD. I’ve noticed that I have cut down the number of outdoor walks, x-country skiing, and snowshoeing excursions since I’ve been diagnosed. I wish this could be otherwise. Spring is almost here in the Upper Peninsula of Michigan (Iron Mountain), and I’m excited about getting out in the yard and gardens again.
My career was one in the field of education, teaching high school students, and then in the area of guidance counseling, pre-kindergarten to 12th graders, primarily in a very small Wisconsin school district. (During that time, I was exposed to every flu virus and respiratory illness around and spent much of the winter ill. I also was a caretaker for my husband before he died and my elderly mother after I retired, and they were both sick with pneumonia a couple of times. Last summer I had an allergic response to something that severely stressed my immune system, so who knows how all this began.) After I retired, I became more outdoor oriented, kayaking and hiking in many beautiful places. The world of art also opened up to me and I am an active member of an artist co-op business, painting, drawing, and stitching all kinds of creations. My life is very active.
During the last few years, a wonderful man has come into my life, and in November, Terry O’Connor and I were married in a beautiful sunset ceremony in Mazatlan, Mexico, with 15 family members present. He helps me to feel loved and happy and I feel extremely fortunate. Family and friends are very important to both of us and we are currently bringing together two households—one in Massachusetts and one in Michigan. The biggest thing that will happen during this month is that Lewis and Gray, Terry’s two cats, will be moving to our Michigan home. We’ll be driving them here, so it promises to be quite an adventure.
We have four children between us and seven grandchildren. This year, we’ll be helping to celebrate the graduations of two of our grandchildren, one in Colorado and one in the state of Washington. Life is full. So with that in mind, I look forward to celebrating the good things that happen in each day, from the goldfinches at the birdfeeders who are showing me their Spring yellow coats right outside my “office” window to the few remaining patches of snow that are rapidly disappearing.
I look forward to hearing from anyone who might like to write me.
(Ed. – due to intrusive contacts to some of the people on this site, we have now had to remove all contact details.)
My name is Laraine, aged 63, and I live in southern England, UK. I was diagnosed with Non-Hodgkin’s Lymphoma in March 2009 after a routine blood test and bone marrow biopsy. I was also told I had an autoimmune disease but at the time not told anything else. I guess being told I had lymphatic cancer was enough to take in and I didn’t ask many questions at that time. Sometime later I found out the autoimmune disease was CAD. I had been diagnosed with Raynaud’s syndrome in my early 20’s so had always suffered with cold feet and hands but it wasn’t really a problem. Now though the cold is a major problem.
At the moment I am restricted to staying indoors for most of the winter (unfortunately, in this country a day in spring/summer can be like winter!). Even with hat, scarf and gloves on if I am out too long my hands, feet, ears, nose can go blue/mauve/white and be quite painful. On one or two occasions lately even my tongue has gone blue. It feels tingly and then changes from pink to blue which was quite alarming the first time it happened. When I asked the doctor why it happened he just said it was my antibodies.
I am also finding when going into air conditioned places, or even aircraft, that I start getting an itchy sensation in my nose, sneezing and then appear to have an awful cold. I can feel quite unwell and it takes me a couple of days to get over it. I must remember to wear a scarf to cover my nose and mouth in these situations! Are these symptoms of the CAD experienced by others? It may be that it is the lymphoma.
As yet, the only treatment I am on is 5mg Folic Acid. My haemoglobin is 9.2, which although a little low does not seem to concern the doctors now. It seems as long as I stay in the warm I am not too bad – albeit not a very nice atmosphere to live in. Sometimes I feel so hot but I have to be to keep my feet and hands from going blue/white.
Because the weather has warmed up my haemaglobin has gone up to 11.1 which is great news.
I do try and keep my mind busy – I still work at home, but I really do look forward to the summer when I can walk around perhaps without any socks on – today I have 3 pairs thermal socks on and a fur lined pair of boot slippers (great – bought in the winter from Marks & Spencer). I bought two pair as they really are helpful. Look out for them next year!
I have found your site so helpful – there is nothing like it here in the UK and everyone needs to feel that they are being cared for when they are unwell, especially so when the disease is so very rare. Your site has provided me with so much useful information and I am very grateful.
To give some demographic context: I’m a 76 year old male with a 28 year history of heart disease–two heart attacks 25 and 28 years ago which have destroyed about 40+% of the heart muscle. Otherwise, pretty healthy and active. My first hint of CAD was 3 ½ years ago when blood tests started failing (couldn’t be read) due to agglutination. It took about four months for my HMO (Maryland) to discern that the problem was due to Cold Agglutinin Disease. Regular blood tests over the next 3 years plus 1 mg of Folic Acid and some B12 vitamins were all that was prescribed. I had the usual symptoms of CAD — fatigue, dizziness, shortness of breath, more angina – due to extra stress on the heart. Most of the blood test values were below average over those three years, but not dramatically until March of this year, 2011. At that point, (and to the present) the lab’s equipment could no longer read most of the tests due to hemolysis and/or agglutination. About all that the labs could report were Hgb. and manual retics. By that, I mean the usual precautions of having the heated tubes rushed to the labs no longer sufficed and the labs reported they were unable to test for CBC, and that included Hematocrit and computer analyzed Reticulocytes. Haptoglobin also could be measured but it had dropped to below 7–unreadable value.
Two months ago, the three Oncologists I’ve worked with at my HMO discussed using Steroids or Rituxan. One of the three suggested starting with Steroids since they were less intrusive and safer. Then, a week later, the senior member of the three told my wife and me that Steroids only work for Warm Agglutinin Disease so Rituxan was scheduled. I had 4 infusions over a five week period (with a week off due to a bad cold I had). Each of the four knocked me out a bit more than the previous one. During the 3rd treatment, I had the interesting “allergic reaction” in which the entire body goes thru violent shaking for about five minutes. Quite uncontrollable but interesting. My blood pressure that is usually in the 90s over the 40s flew up to 170 over 115 or so plus a good bit of angina. The treatment for the shaking was a large dose of epinephrine and several other injections that controlled the problem. Although the heated blanket they gave me had instant good effect
The Rituxan may be working, (probably too early to tell) and my Hemoglobin numbers are rising. Fatigue is greatly reduced and getting better weekly. Rituxan knocked my Hgb from an average of 11 (for several years) to 7.9. The HMO debated prescribing two units of blood but waited until my next weekly blood test. Fortunately, it rose to 8.1 and has continued to rise weekly until last Friday’s was 11.1. More weekly tests will determine if I hit the magic Remission with normal Hgb. or hang around the same somewhat low Hgb. level common to CAD. Perhaps, my blood will improve so that the machines can test for CBC and Hematocrit, etc. (As of Friday’s–August 26/11 blood test, Hgb. remains at 11.1 and Hematocrit still cannot be read.)
As a side point, my wife and I have been going to Florida for the last three years and plan to again to avoid the cold weather of MD. But, in fact, I wonder if that is necessary. Northern Florida can be pretty cool in Jan/Feb and putting on scarves and hats is no burden in (pretty mild) MD.
Many thanks for the Web site. For a disease that affects such a small percentage of the population, the internet is ideal for spreading information and your web site is a great instrument for all of us with this malady.
In closing, I’d like to ask a couple of questions to see if others on the site have answers or advice.
Do any of you experience the same problem I have with blood tests? The HMO lab pre-heats the tubes and takes them literally 20′ away for analysis. Even with these precautions, the machines cannot read Hematocrit due to agglutination or hemolysis. The technique that worked for three years of having a driver take the samples to the U.S.’s largest lab has also failed (since April) due to agglutination.
Given the fact that Rituxan knocked my Hgb. from 11 range to 7.9, would any of you advise me repeating a Rituxan regimen if the Oncologist suggests it?
My cold agglutinin titers have jumped around a great deal. Within a week from 600s to 20,000, then back to 300s then a couple of weeks later back up to 2500s. Common? Generally, they seem to be around 300s to 600s.
Last question: many of you seem to be on 2 mg. of Folic Acid. Is that a “magic bullet” and I wonder if I should urge my doctor to increase my 1K dosage to that level.
Thanks again for maintaining the web site. It has helped me a great deal.
I was diagnosed a little more than a year ago with chronic lymphocytic leukemia, which was discovered after the doctors realized I had CAD. The doctors performed a bone marrow biopsy as a precaution only, thinking that it was probably stand alone CAD, but alas, this was not the case! I am a 44 year old mother of two and am just thankful that I will be able to raise my children (they are 5 and 7), since CLL is so slow moving. Raising my kids is my most important mission!
I am very upbeat about life because I know how lucky I am to be alive and to have my wonderful family. Of course, some days I can feel really sorry for myself, especially when I can’t seem to shake the blue toes, fingers, nose- you name it. I have to remind myself that I am part of a lucky few that fall under the category of the “new healthy:” unpleasant diagnoses but we are among the living and able to enjoy life if we choose to- we just have to work around the illness. I am tested every 3 months or so and will hopefully not need treatment for several years. It’s the jaundice that gets me, but that is only when I catch a cold during the winter. Unfortunately I had jaundice four times last year, but I am making a concerted effort to be more vigilant around sick people- which can be tough as a high school teacher and the mother of two children in elementary school…..
I never leave home without several self-activating foot and hand warmers and my new electric Columbia boots are amazing. I have a heater under my desk, which I use all the time. And after all, I now have the perfect excuse to buy more cashmere- strictly a consignment store purchase, though!
My name is Beverley and I live in Wellington, New Zealand.
I was diagnosed with CAD in Feb 2007 and being a fit 69 year old it came as a shock to me. I was climbing a steep hill with my walking group on a hot sunny day and I just could not go any further. My heart was racing, and my legs were so weak so I came down from the hill onto the flat and I was fine. I went to the Doctor the next day and within a few days I was having my first blood transfusion. I felt a new woman, but unfortunately it does not last.
In late March I went to Christchurch to look after my 11 year old granddaughter while her parents were overseas but I became very sick with vomiting and diarrhoea so by the time I came home my blood count was in the 70’s and I spent the night in the hospital getting transfused. I had 5 transfusions every 2 months in 2007 and my readings were between 77- 96.
2008-2009 was a good year as I was in remission and my blood count reached 115. Unfortunately in June 2010 the count was back to the 80’s. 2011 has not been a good year for me heathwise with various other ailments.
The Specialist offered me the drug Rutuximab to see if that would help. I went to hospital one day a week for a month for treatment. I was lucky I had no serious side effects, but he also told me I had Waldenstrom’s Macroglobulinemia (what a mouthful) which was a big shock. WM is a rare type of slow growing non-Hodgkin Lymphoma cancer. I had never been examined for that but I guess the blood test must have shown it. After my treatment I asked about what the outcome was but he said not to worry you have plenty of life to live yet so I am going to take his advice. There is some very good web sites on the internet which is very helpful for this disease.
CAD has been a challenge especially as I suffer with very sore fingers when it is cold. My nose and tips of the fingers go black when it is really cold like snowing which fortunately is quite rare here. I take 5mg of folic acid daily and I use heat and click glove warmers which do help. I have a drawer full of merino scarves, hats, gloves and singlets. My blood count is now 97 and I am feeling better and gaining my appetite. I have more energy, and with summer around the corner life will be wonderful.
I do enjoy reading your stories – one does not feel so isolated as there are so few of us sufferers in New Zealand.