Here are some self-care steps you can take to manage Sickle Cell Disease:
- Keep checking for recent research studies on SCD.
- Stay up-to-date with your medical care and keep yourself informed about your condition.
- Work together with your hematologist and your regular healthcare team
- Mark out or Create a ‘pain plan’ (which is a list of pain medications that works for you) with your healthcare team, and either carry a validated copy with you at all times or have easy access to an electronic version
- Make sure you have Certain document like your haemoglobin card with you at all times that summarizes previous hospitalizations or emergency room visits. The individualized pain plan from your doctor can also be included
- If you have acute pain, document the symptoms and location of the pain before and during attempts to manage pain with therapy
- Look up upon ways that help to lower and/or support your pain before it becomes an emergency.
There are other things you can do to stop the stigma attached to SCD especially in terms of being prejudice individually. Involvement and education of family members and the extended community surrounding you is essential as well. Help them to understand the grass route of the ailment.
What advice can we give to family in managing the illness?
Family involvement is a great way to support people suffering from SCD. It is always advisable for family members to know how to support their loved ones in this ailment. Most of the time people suffering from this ailment don’t want you to feel sorry for them, they sometimes tend to be ok but deep down they are in crisis. Help them to eat healthy meals and also with their medication intake. family Centred care has been advised and disclosure to be made to meet the appropriate understanding of the child’s age in terms of emotional needs and informational support for children and parent. ( Anionwu & Atkin, 2001) concluded that’s the government needs to work on policy and practice drawing issues relating to aspect of care families go through in terms of respect, training of health professionals, more improved quality of care, culturally sensitive care.
- Educating yourself more about the condition is necessary in order to support your family with this ailment. Help them avoid things that can trigger crisis.
- The first and foremost thing any doctor would tell you to prevent such crisis is drinking loads of fluids, esp. water. Why? Always remember, water dilutes blood and in conditions where there is a clot, as it makes blood thinner, it helps in keeping the clots at bay. So make sure they drink lots of water or fluids.
- Help them prevent infection as this causes complications and brings about crisis.
- Making sure they have regular check ups at all times.
- Educate people around you about the illness that the ailment is not contagious but it is inherited.
- Please help make their lives a better one.