Sickle cell remains a much maligned disease. As a primarily African disease, no one seems to be interested in affordable treatment or cure. Nevertheless, success stories abound of persons who have lived with the disorder. The oldest person living with sickle cell is 86 years illustrating this point.
There is already so much information out there on sickle cell disease. However, I am moved to share information I usually give my patients that are live with the disorder. This week I've already seen two and neither of them came at a time when they could benefit from these tips. So permit me to add my 2 pence where it may be useful
1. Hope is key
Sickle cell used to be a cause of early death but that picture is fast changing with advent of stronger acting antibiotics and good information. So go online. These blogs here and here are dedicated to talking about living successfully with sickle cell disease. Shared experience can never be under estimated. Besides the cure is already available and even though it may be a little expensive at the moment, you just never know.
2. Register with a haematologist
Specialist doctors now exist that are experts in managing blood related disorders. If there is one around you especially if you have access to a tertiary hospital, take advantage.
3. Routine drugs
All persons with sickle cell disorder should take 1mg of folic acid and oral antimalarial usually paludrin everyday if they live in areas where malaria is ever present such as Nigeria. This helps to boost their blood and fight malaria. Avoid excessive iron supplements though. The problem is not lack of iron: actually there is excess iron due to continous breakdown. So the risk of too much iron is ever present especially if the sickler is repeatedly transfused.
4. Increase your daily intake of water
Water is best blood thinner. Dehydration leads to clumping of red cells which can trigger crises. This is why strenous activities are not recommended for sicklers. Make it an aim to drink at least 3 liters of water everyday. That is 2 big eva bottles of water minimum.
5. Increase food intake
Persons living with sickle cell disorder are always burning energy. This energy is used to replace red cells as they are being continously destroyed. So if a non sickler eats a plate of rice, a sickker will require 3! High protein foods are ideal. The limit of 3 meals a day should not apply to sicklers. When they do not eat well, they grow poorly compared to non sicklers.
6. Avoid crises triggers
Many times there are no known triggers for a crises. But overtime, a sickler may know conditions that are unfavourable for him. I was involved in managing a sickle cell crisis recently. The trigger? He went for a military recruitment exercise! While it is commendable that you aspire to become anything in life, sound judgement is ultimately important.
7. Every fever is an emergency.
It is best to see a doctor in cases of fever. Due to the shortlived nature of the blood cells, serious malaria is unusual in a person with sickle cell disorder. As such all fevers should be viewed suspiciously as it may not be malaria
8. Check for spleenic enlargement
The spleen is a small organ usually hidden under the left lower ribs. It should not be felt ordinarily. If it enlarges, it may trap blood cells, worsening the already low blood levels. As such it should be looked out for especially in young sicklers. Just put your left hand just under your left rib cage. You should feel nothing there. If that changes, go to the hospital. Over time, the spleen usually disappears in sicklers.
9. Know your steady state PCV
The PCV is a measure of blood level. Many persons living with sickle cell do so comfortably with low PCVs. Nevertheless, a doctor is likely to order for a transfusion at a low PCV if he does not know what your blood level usually is just to be safe. You will avoid unnecessary transfusions if you tell him what your usual PCV is. Remember that the risk of too much iron in the system increases with each transfusion.
10. Vaccination
We mentioned earlier that persons living with sickle cell disorder usually lose their spleen. This is not without consequence as they become vulnerable to certain organisms that cause serious illness and are resistant to common antibiotics. When theses organisms attack, they require very expensive antibiotics and the chances of survival are poor. How much wiser to take vaccines against these organisms. This is the cost effective thing to do. Vaccines against Pnuemoccocal and Salmonella organisms among others are readily available.
See full article at www.primerhealth.com.ng
No comments:
Post a Comment