Sickle Cell Advocacy Network-Uganda

Sickle Cell Advocacy Network-Uganda "Break the silence about Sickle Cell Diseases "

21/08/2024

Does sickle cell cause ADHD in children?

According to multiple studies, children with SCD have higher rates of ADHD than the general population of the other children who are healthy.

Some studies found out that children with SCD and ADHD have higher rates of:-

1. Learning problems
2. Stroke
3. Abnormal MRIs among others.

So as caregivers, let's normalize ADHD screening in our children especially those presenting behavioural concerns or poor school performance.




# sicklecelllivesmatters

15/08/2024

Which one is true or false

A nurse is caring for a child with Sickle Cell Disease. What discharge instructions should the nurse provide to the parents of the sick child?

1. Avoid high altitudes
2. Restrict all activities for 2 months
3. Deferasirox helps prevent liver damage
4. Provide high calorie, low protein diet
5. Inheritance is by autosomal dominant genes

Let me know in the comment section


01/08/2024

Hello everyone.

Happy new month to you all especially our dear distinguished warriors. May this new month favour you all.

I pray for health for all of you in Jesus' name.Be blessed and stay healthy

04/06/2024

June is Men's Health Month

Every person living with sickle cell disease have a story to tell but men are more reticent to share experiences.

Sickle Cell can affect the man in peculiar ways like priapism and effect on the s***m cells.



10/05/2024

Sickle Cell Advocacy starts with you!!

There is a lot of work that needs to be done as regard to Sickle Cell Advocacy.

But one thing is for sure, l believe that this starts with you. I mean you who is reading this now.

As our loved ones go through antagonizing pains and sufferings as a result of SCD, let's all learn to talk about SCD and the need for it to get better attention world over.

09/05/2024

No, l am not lazy for not wanting to walk, my hips are on fire 🔥
No, l am not lazy for sleeping the whole day today, l am actually burnt out exhausted
No, l am not irresponsible and forgetful, right now l am experiencing brain fog.

#

23/02/2024

Someone once said..."Your family doesn't know how much difficulties and life's pressure you go through in your daily life and business.

Your job doesn't know the circumstances of your home and life itself.

Your friends and loved ones may not understand the size of the new and old responsibilities that are above you.

And your partner is always waiting for your love and support. He/she may not understand the amount of pressure you go through no matter how you explain to them. After all, they are humans.

Therefore, you should know that no one feels about you but you alone. No one will understand what you may be going through.

Keep going..♥️..
It is well.



02/02/2024

Know your genotype
AA+AS✓
AA+AC✓
AA+SS✓
Whereas the below combinations are not good
AS+AS×
AC+AS×
SC+AS×
These genotypes will definitely lead to the birth of a sickler.



22/01/2024

SCD and depression

As in other chronic diseases, people who live with SCD may feel sad and frustrated at times. This can manifest itself in several ways, including anxiety, stigma, sleep disorder, depression and even psychosis over time.

Because of the pains and sufferings that results from the constant hospitalizations, some SCD patients especially the females tend to go into some form of depression, normally in the young adults.

Depression and anxiety often coexist. For people with SCD, concerns about their health, fear of becoming ill or even dying and many other worries can all contribute to anxiety.

How to find help
Let us encourage our children, brothers and sisters, uncles and aunties, our friends, our spouses to please always try to talk to a qualified counselor in case they are feeling unwell. Problems talked about is halfway solved. Therefore, let's encourage the need for counseling. It is very essential in this journey.



17/01/2024

Sickle Cell disease classification

SCD is a health condition that has the potential to lead to a number of complications.

These are the major types of SCF which are classified according to the hemoglobin abnormality

1. Hemoglobin SS
2. Hemoglobin SC
3. Hemoglobin SD
4. Hemoglobin SD
5. Hemoglobin Beta thalassemia negative
6. Hemoglobin Beta thalassemia positive.

Though in Africa, the most common type is the HbSS also known as Sickle Cell Anemia.


01/01/2024

Happy New Year 2024 dear warriors and our beautiful caregivers. May God give us a pain free year full of success and accomplishments.

07/12/2023

IVF, PGD in preventing sickle cell genes transmission.

Sarah: Hello Scovia, my boyfriend's genotype is HbAS and l am also HbAS. We truly love each other and we don't want to break this relationship. We believe we can live happily if not for the issue of our genotypes.

Me: Can you share with me a little bit about yourself, your partner and your financial strength?

Sarah:Well, l am financially successful and do not have a lot of struggles in regards to money. I am a Co-founder of______.

Me: PGD- Preimplantation Genetic Diagnosis with In Vitro Fertilization can prevent the transmission of Sickle Cell genes from AS parents to their offsprings. But this requires money which l believe is not a problem to you both according to what you told me earlier.

I will advise you go ahead with your marriage plan. Reach out to a fertility specialist together with your partner even here in Uganda or anywhere else in the world that you are ok with.Some tests will be done and the process of Fertilization may commence there after. During the process of IVF, the Doctor will screen for octyes for Sickle Cell traits. They will be discarded leaving the normal ones only for implantation. This way you will can have healthy children and still spend your lifetime with the love of your life.

Sarah: Thank you.

Me: Science is open now days. This information is open and can be accessed by anyone from anywhere in the world. Let's embrace positive mindset. If you have a challenge that Science and technological advancement can solve, please go ahead and embrace it. Science can solve this and don't be lied to that this is not God's way of bringing children into this world 🌎.God gave man the wisdom and knowledge to make the world a better and a happy place to live in.Good luck to you both.

A few months later...

Sarah: My partner and I are going to get married soon, please make a plan to attend our wedding 💒💍.We took your suggestion.

MONEY, IVF AND PGD can help AS to marry AS without fear .

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