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Please Help! After Sickle Cell Anaemia Diagnosis, What Comes Next?


How do I look after my child after a Sickle Cell Anaemia diagnosis? What causes them to be ill? What is the best treatment? Where can they get treatment? Can they play football or what happens if they get malaria?

These are some of the genuine worries that parents have for their kids with the SS Genotype, which causes Sickle Cell Anaemia.

In AskAwayHealth, we have a special interest in Sickle Cell Anaemia to help raise awareness about the issues around it and help us manage the health burden it causes.


What are 'Sickle Cell Anaemia' and 'Sickle Cell Disease'?

These conditions involve the blood disorder affecting the red blood cells, which passes among families.

There is a genetic disorder affecting the particular blood cell which carries haemoglobin.

Haemoglobin is an important protein on our red blood cell which makes sure we have enough oxygen circulating round the body.

For conditions like Sickle Cell Anaemia (SCA), once you have the 'wrong code', (gene) the condition will affect you for life.

How do you get the 'wrong code', though?

All Sickle Cell Diseases (SCD) are inherited - that is, passed from one family member to the next.

The genes (codes) usually occur in pairs. Having just one abnormal code (S gene), means you have the 'Sickle Cell Disease' - there are several ways in which the code can be structured.

In Sickle Cell Anaemia, both codes are abnormal so the individual will have the SS gene.

If you would like to know more of the difference between these two terms (SCA and SCD), then check out this video here which explains in detail.


Diagnosis of Sickle Cell Anaemia

Why You Need Counselling After Sickle Cell Anaemia Diagnosis

But we are looking at counselling, and the reason we picked this topic was because of an enquiry received on our facebook page.

A new father was devastated having just discovered their baby girl has the SS genotype.

Why was he shocked?

Well, before they got married, he and his fiancee took genotype tests. He was AA, and she was AS.

 So as far as they knew, they expected any kids they had to either be AA or AS - and if you would like to understand how SS genotype is inherited and the chance of kids inheriting the SS genotype, then watch this video here.

So in this type of parent combination, we expect that any kids born have a 50% chance of being AA and 50% chance of being AS - they should not have a child with the SS gene.


How Devastation Suddenly Landed

What happened?

Well, after she turned 6 months, their daughter was admitted with serious illness, and in the course of tests to treat her, her genotype found to be SS.

The parents had to repeat their tests, and Dad found he was actually AS.

 So these parents are 2 sickle gene carriers, and if you watched my video, you would know that each child of this couple has a:

  • 25% chance to have the SS gene,
  • 25% chance to be AA,
  • and 50% chance to be SS.

And now, he asks for counselling to deal with the current situation - the shock of this new sickle cell anaemia diagnosis and manage things going forward (child ill in hospital, and the future of this child and other kids, their marriage - the works).


Nigeria's Sickle Cell Anaemia Burden

According to the Sickle Cell Foundation Nigeria in a report published with a national population count of 160 million:

(In numerical terms), over 40 million Nigerians are healthy carriers of the sickle cell gene, while over 150,000 babies are born each year with sickle cell anaemia (Hb SS). This is by far the largest burden of the disorder anywhere in the world, and most of these children would die in childhood from ignorance and lack of access to proper diagnosis and care.

Sickle Cell Foundation Nigeria

This is why counselling in Sickle Cell Disease is so essential.


What is Genetic Counselling for Sickle Cell Diseases?

Genetic counselling helps to guide people through how an inherited condition like SCD happens; why and what causes them and their families to be at risk. 

It looks at all the options they have to prevent or manage the condition and the chance it repeats in the family. This includes discussions about treatment options available.

In addition, potential effects on an individual's lifestyle are considered to help prepare minds for the impact of the condition.

Commonly people look at the possible outcomes to decide: If I am AS genotype, can I marry a person who is also AS and have children together?

What comes next after receiving news of a Sickle Cell Anaemia Diagnosis? Some of the issues revealed.

Can AS marry AS?

You may have your own opinion, but this is not a question anyone can answer except for the specific people concerned - all we can do is advise about the implications if they choose to go ahead. 

The impact on any children they bear with the SS genotype is quite profound and the matter should be carefully considered.

In this article on our website, we provide specific details about ISSUES to consider and help make that decision - you can also download our free guide : AS Genotype - 7 Point Checklist


Addressing the Key Questions After a Diagnosis of Sickle Cell Anaemia

So you see why counselling is essential and understand that genetic counselling helps people with or related to people with the S gene understand inherited conditions, how they happen and the risk it could happen and repeat in the family.

 But there are so many other questions to ask following a sickle cell anaemia diagnosis.

For a family that is hardly prepared to deal with the situation of having a child with the SS genotype, the present (and future) can look fearful and traumatic.

Counselling For When You Have A Child with SCA

These are some of the essential issues in families where someone has SCA need to consider:

What's The Most Likely Cause For My Child's Symptoms?

(Related - Are there other possible causes?)

Answer: SCD is a disease passed in the family from one person to another, where the structure of the red blood cell is abnormal and leads to several problems and overall ill health. 

In this article, we cover the different types of illness people can get from having the abnormal sickle or S gene.

At any time, their blood cells cannot carry oxygen properly, so they are anaemic.

We know this (anaemia) makes people susceptible to even more ill-health in cases where other people would be fine - exercise, stress, dehydration are just a few examples of when a person with SS may fall ill.

In respect of cause, SCD is quite a specific problem, once the gene abnormality is present, it's challenging to allocate cause elsewhere.

SCD is not an infection like HIV or AIDS; and it is not due to any problem during pregnancy.

It is NOT a form of Cancer or Leukaemia. It is not the same as Iron Deficiency and you cannot 'catch' it from another person.

Sickle Cell Anaemia happens because the child has received the S gene from BOTH parents.

What Tests Are Needed?

Answer - Over time, people with SS gene may require several different tests at one stage or another. 

One that will certainly be constant is blood tests.

Blood tests show the level of anaemia or how well the organs are working.

If admitted for an illness, depending on the symptoms, they may require urine tests, Xrays or scans, and so much more to help diagnose and treat.

Your doctor or nurse will explain what test is required and the reasons for them.

However, regular blood tests can be a routine for people with Sickle Cell Anaemia.

What treatments are available, and which do you recommend?

(Related - What Side Effects Are Common With These Treatments)?

Answer - There are several possible treatments. Some are for prevention of sickness and given as routine.

An example here is with vaccination to prevent common illness like pneumonia; or using antimalarials. Others are for treating specific conditions such as antibiotics or blood transfusion.

The side effects of treatment can be very specific and something your doctor or nurse will prepare your mind with - depending on the treatments they are having.

We also look at possible cures available around the world in 2020 for Sickle Cell Anaemia - watch video here.

What's My Child's Prognosis?

Answer - This is a question whose answer is unique for every child.

It means a (medical) forecast - telling how the illness might or will progress in future.

Making a prognosis involves looking at the child's general health, how often they have been ill and their response to treatments.

It is a critical discussion to hold with your child's specialist - usually, this is a haematologist.

They treat conditions that affect the blood and its cells like sickle cell anaemia, other types of anaemia and so on. 

While knowing the prognosis is useful, it should not be your main focus.

As individuals are different and while we understand the way sickle cell disease affects the body, access to treatments and other supportive care can make a difference in the result of treatment from one person to the other.

Are There Dietary or Activity Restrictions?

Answer: This is so important. Apart from the haematologist, other medical practitioners can also be involved in the care of a child with SS genotype if necessary.

Examples are the dietician or physiotherapist. There are no specific restrictions in the diet for a child who has SS anaemia, and they should have a balanced combination of the different food groups. 

In respect of the activity, indeed, stress - including physical stress can sometimes provoke a crisis and lead to ill health, so avoiding severe exertion or lengthy exercise is important. 

This needs to be balanced against their need to be involved in some physical activity that will help build them up.

Again, it is individual and depends on the child's particular health and wellbeing to date. Too many restrictions could also be damaging.

Here are some sensible tips:

  • Make sure they have enough water to drink regularly and after any form of exercise. This prevents dehydration that can lead to a painful crisis.
  • Avoid getting cold especially in cold weather or after some activities like swimming from which crisis can develop.
  • Avoid getting overheated - especially in warm climates and after exercise. Being very sweaty can lead to chills afterwards when the body is cooling down and illhealth.

Discussing these suggestions and working with your child's school teacher about these and keeping an eye on your child, can support them to have a happy, balanced time in school.

Do You Have Brochures or Other Printed Material That I Can Have? What websites do you recommend?

Answer: Many people feel lost and find it hard to get the information they need.

Why is it important to learn about the condition?

Mainly, it is because knowing more about it makes you feel less uncertyain and afraid of the condition.

This allows you to handle the condition better for yourself or your child, understanding what happens in the body and ways you can protect your health and boost it.

At AskAwayHealth, we provide helpful health information and can guide you in many of these enquiries. Ask here or subscribe by clicking the blue button on the top right corner to join our health community.


Coping and Support

If you or someone in your family has sickle cell anaemia, you might want help coping. Consider:

  • Finding someone to talk with. Ask your doctor if there are support groups for families in your area. Talking with others who are facing the same challenges you're facing can be helpful.
  • Exploring ways to cope with the pain. Work with your doctor to find ways to control your pain. Pain medications can't always take all the pain away. Different techniques work for different people, but it might be worth trying heating pads, hot baths, massages or physical therapy.
  • Learning about sickle cell anaemia to make informed decisions about care. If you have a child with sickle cell anaemia, learn as much as you can about the disease. Ask questions during your child's appointments. Ask your health care team to recommend good sources of information.


You see - we could spend so much more time talking over all these issues that arise after sickle cell anaemia diagnosis, but I share just a few pointers that hopefully get you in the right direction.

What are some of the important issues would you like to know following a Sickle Cell Anaemia diagnosis?

Please share them in the comments below. Stay Well!!!

More Reading:

Reference 

  1. The Management and Control of Sickle Cell Disorder By Professor Olu Akinyanju, Chairman, Sickle Cell Foundation
  2. The importance of genetic counselling at sickle cell anaemia
  3. Sickle Cell Anaemia
  4. Sickle Cell Disease and Sickle Cell Anaemia

Editing by AskAwayHealth Team

Disclaimer

All AskAwayHealth articles are written by practising  Medical Practitioners on a wide range of health care conditions to provide evidence-based guidance and to help promote quality health care. The advice in our material is not meant to replace the management of your specific condition by a qualified health care practitioner.
To discuss your condition, please contact a health practitioner or reach us directly through info@askawayhealth.org


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