#Sickle cell Strong: I have really... - Sickle Cell Society

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#Sickle cell Strong

Anzy profile image

I have really amazing news which I want to share with everyone!

I am one year hospital admissions free! #Sicklestrong

As I am sure you all know I have sickle-cell anaemia an inherited blood disorder. Red blood cells which are round and soft become hard and sickle shaped, this causes a multitude of problems such as painful crisis, organ damage and organ failure, extreme fatigue, strokes, swelling of extremities, bacterial infection and may lead to death.

Through the years I have struggled with having sickle-cell, there has been many ups and downs, bouts of depression in dealing with a life long illness but it has taught me many lessons, some hard but always necessary in making me the person that I am today and despite not realising it at the time I am grateful for everything I have been through.

It is a credit to all I have learnt and the support system around me that has kept me out of hospital this year. In my lifetime there has never been a full year without me being admitted to hospital, every year since I was born I am admitted to hospital five or six times a year from one to six weeks at a time.

I had enough of always being sick and I have tried different things throughout the years. But last year I decided to try something different subtle. I kept meditating, I tried to eat a little healthier but the main thing I have changed is drinking alkaline water. It has revolutionised my life, I drink four litres of it every day and it works! It really works. I am not saying I have not been sick for a year, I still get daily pain, and ‘mini-crisis’ every few months but the really bad crisis that I used to get has gone. I know it is not forever but I have enjoyed a year without once having to deal with that level of pain and I am beyond grateful. I am looking forward to more healthier days ahead.

13 Replies

I'm the same, found out I had sickle cell at 6 months old and was in hospital quite a lot...but as I got older I learned to deal with my pain!

Along the years my pain was so serious, I had 5 strokes, 5 fits etc but I'm still here through god giving me the strength!!!

Now my pain is less and I've not been in hospital for 2/3 years!!!

I'm eating healthy with I never did before, I'm do excersise to live longer!!!

I'm proud of who I am and I'm proud of my sickle cell!!!

Floe1 profile image
Floe1 in reply to EmpressFaucher

Well done, it is definitely possible. I have Sickle cell, I am 35 years old married with 2 kids. I have not been admitted to hospital with a Sickle crisis since the age of 6 years old. I definitely still have pain but manage it on my own. I have had my spleen removed and have had surgery for a rare tumour which thankfully wasn't malignant.

I have learnt to self medicate and catch the pain before it becomes worse. My network of friends and family are brilliant but keeping on top of your fluids, drinking water mainly, keeping warm and exercising regularly are my mantra to staying healthy.

It is possible but have learnt to understand that there's different levels of Sickle Crisis. It's all about your lifestyle and mind frame in dealing with it. I hope there are many more of us out there attempting to beat Sickle cell.

That's Fantastic news!! I will read up and try the alkaline water. Not been hospitalised myself in a few years , but I clearly remember the days of feeling like I was constantly in hospital. Hope you stay well and off of the wards.

Hi Anzy I am so happy for you. I am glad you have found something that works for you. I haven't had such luck. Since December to February, I had 5 admissions and it's been extremely difficult. Within that time, I had acute kidney injury, 2 painful gout episodes and crises. But I am still grateful. I read to see if I can use the alkaline water buy due to my kidney problems, I can't use it. I take each day one by one. Unfortunately my sickle pain is not the medicating at home type. It's so intense the my heart rate and blood pressure goes up. Everyone b strong.

Anzy profile image
Anzy in reply to jo19

Hello Jo, I am so sorry you are going through this difficult time, my thoughts and prayers are with you, sending positive energy your way. Be strong my fellow sickle cell warrior, I know you will be able to get through this time. Hopefully there is some other alternative treatment you can find that will help you. You should ask the others and maybe someone has found another way.

jo19 profile image
jo19 in reply to Anzy

Thank you so much Anzy. I am trying to stay positive but it's so hard. I keep having this very weak spells that comes and goes. It usually lasts for 3 weeks. It's a very distressing time for me because I am not able to get up from my bed. I have had several tests to find out what might be going on but nothing has been found. I don't know what to do. I feel sorry for my husband because he has to care of 3 kids on his own. I just want to be well. If anyone knows why I might be having this weakness please let me know. Any suggestion will be appreciated. Thanks.

Hello Anzy this information is really helpful thanks for sharing. So where do you get the alkaline water from? If you don't mind me asking.

Anzy profile image
Anzy in reply to Mamo07

Good afternoon to you too! Please feel free to ask me any questions, that's why we are a community. I order a alkaline filtration jug from Amazon, it filters normal water and makes it alkaline. Literally changed my life.

God is good we thank hom

What is the difference between akaline water,spring water, and purified water? I am so happy for you!!!

Anzy profile image
Anzy in reply to Bluebells

Alkaline water is really good for you; it is less acidic than normal tap water, it is supposed to neutralize the acid in your bloodstream and help your body metabolize nutrients more effectively, leading to better health. But all water is really good for you, it is just that the benefits of alkaline water have worked really well for me. Also, Thank you very much!

Dear Anzy,

Can a 9 month baby use the alkaline cup (longrich)?

My Daughter was diagnosed ss about 2 months ago and we are making sure she takes are medications as at when due. We have not experience any crisis since then but I want to make sure she stays out of the Hospital as often as possible.

Hey there MDKE,

I am glad you're daughter hasn't had a crisis. Alkaline water is great for everyone. I am no expert at all but I always recommend Alkaline water. According to Parent first: A child between the ages of 1 and 5 years can consume 2 litres of alkaline water daily, and a child between the ages of 5 and 12 years can consume up to 5 litres. Alkaline water can also help energize your child during sports and activities.

Remember though always seek a doctors advice first and foremost if your daughter is unwell. I wish you and your family the best. Stay safe.


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