I was fortunate to have been diagnosed with symptomatic sick cell trait at the age of 16. I have had exceeding severe yet infrequent crises all my life. However, there were symptoms SCD patients with the full blown disease HB SS have that I never had or only had once or twice. My hematologist said that SCD patients tend to have more severe symptoms with age. I am now 51. He imagines the same might be true for trait patients like myself.
Acute Chest pain only started about 7 years ago. Now a new symptom has occurred. At first it seemed unrelated and not aggravated by my sickle cell trait. I have Acute Iritis. I have had it four weeks. No connection to the trait occurred to me until after my ophthalmologist ran blood test that all returned negative except for an elevated ESR (a general indicator of inflammation). She asked me if I had any signs of arthritis or other inflammatory disease. That is when I told her about sickle cell trait symptoms, while I was not in crisis or experiencing any severe symptoms, I was having moderate inflammation particularly in my hips. It has been four weeks so far. My right eye was minor and has healed. However, my left eye remains severely sensitive to light. Two weeks ago I went to the ER with a sharp stabbing pain through the center of my left eye.
I am wondering if any of you SCT (sickle cell trait) or SCD (sickle cell disease) patients have experienced Iritis, which you believe was attributable to sickle cell. If so, would you be kind enough to share your story. If the disease progressed to blindness, how long did it take? If the problem resolved on its own or with medical intervention, how long did that take? How did they treat you? In a week, I will get a second opinion from a different ophthalmologist who specializes in Iritis/Uveitis. I admit to being a little frightened. Lastly, I have not decided whether or not, I will mention to the new doctor that I experience symptoms due to sickling red cells. I hate to be labeled a faker or ignorant when in contact with a new doctor. I usually wait until all their test come back negative then I tell them about my worse crises. However, time might be of the essence. We are talking about my eyes. What do you think?
Stay warm in cold weather. Do not become overheated. Are you a very active person? Are you an athlete? When I was much younger in my early twenties, I was on three volleyball teams at the same time. I was fine for months. Then, suddenly, one day for no apparent reason I felt anemic like I was dragging my body around. I felt like someone was pinning me to the bed. Next I had the third worse crisis of my life. I suspect I got dehydrated playing outside and may be was fighting off a cold at the same time. Twenty years later, I had both hips replaced. Nonetheless, I have become good at heading off crisis or turning it around as fast as possible. I tell doctors I am a plant if you water me I usually improve quickly especially if treated early on. Sometimes you may be too dehydrated to recover by simply drinking water, then you will need IV fluids. At least for me, if IV fluids are given early I become significantly better. Ask for IV fluids if you feel dehydrated in the doctor's office so will do so. An ER will alway give you IV fluids in my experience. You will encounter people who will be reluctant to treat the severe pain with the narcotics it requires, but no one will deny you IV fluids so get them sooner rather than later. Next cancel appointment /commitments / promises at the first sign of being in serious trouble (if you can live with yourself doing so), and rest, rest and rest some more at the first sign of serious trouble. Drink water. Ask the doctor to prescribe a prescription strength anti-inflammatory and take it when fighting off a crisis. Soak in warm water. If the pain gets of ahead of you, go to the hospital try to remain calm and/or take a calm friend who can speak for you when you are distracted by off the scale pain. It is tricky with ER fears about drug addicts, but you will most likely only respond to a narcotic. I dislike them but sometimes they are essential. Severe pain itself is damaging to the body and mind. In my opinion, humans were not meant to endure the pain of a severe sickle cell crisis. It is inhuman. Later, you can wean yourself from the narcotic, after the pain drops from unimaginable to just moderate. I hope this helps. I apologize for the lengthy reply, but your symptoms are very similar to my own so I wanted to provide a complete response.
Can SCT go away over time?
Sickle Cell Trait & Thalassemia 