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Stats: 2,548,158 members, 5,868,613 topics. Date: Monday, 21 September 2020 at 07:36 AM
|LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 3:39pm On Mar 08, 2019|
Let's share our daily life experiences and struggles with other people who have one or more misconceptions about us. Our strengths, weaknesses, ups, downs,social life and love life are not excluded.
If you are a judgemental,insultive or abusive person, we don't need you here kindly use the door � .
You're welcome if you have enough love to share.
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|Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 12:51pm On Mar 09, 2019|
Here's a little information about me.
You can call me Abiola. I'm a Nursing student of Ladoke Akintola University of Technology. I'm 23 years old and I'm a known SCD patient. I'm from a nuclear family and I have tWo siblings. I'm the only one with SCD. My parents aren't rich but I've survived thus far.
Word of encouragement for today.
#If you're not yet dead, then Don't stop living#.
|Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 2:30pm On Mar 10, 2019|
So many views and no one is saying anything.
Note that the first step to ending the stigmatization that comes with having SCD is the ability to come out if your � shell and let people know who you are. Yes I know they would talk behind your back and say all sorts of rubbish but after that you're still who you are.
Besides, your coming out can even encourage someone out there to do the same and shake off the shame. .
In the next couple of days, I'll be educating us on some complications of SCD.
You don't want to miss it!!!!!!!!
Let's do well to drop comments please. It will enable me know someone is actually gaining something which is a great source of encouragement.
THANK Y'ALL. & HAPPY SUNDAY
|Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 2:03pm On Mar 13, 2019|
I'm so sorry I haven't made any posts in 2 days. Truth is I've had conjunctivitis (both eye) for more than a week now and it's still present despite all drugs prescribed making it quite difficult to type coz looking at my screen for a long time is quite strenuous .
I should be back pretty soon. Just Pray for me.
Peace ✌ ✌ ✌
|Re: LIVING With SCD(Sickle Cell Disease). by Leem4: 3:19pm On Mar 13, 2019|
I am also a warrior, I have Hb SC and not the popular HB SS.
Living with Sickle cell anemia has always being an herculean task, but I give thanks to God. Due to the nature of my of my HB which Sc, I rarely have crisis nowadays, it had even been years that I have crisis last.
Even though I rarely have crisis, am not stress free. Any little hectic activity wears me out; even reading for long hours also stress me out.
Myopic Astigmatism has also being my issue for sometime now. Any little exposure to strong ray of light gives me headache and blurs my vision.
With my limited knowledge of these condition, Hb SS is not a death sentence. I just see it as a little aberration in haemopoesis that can be corrected. Eating of balance diet, regular intake of Vit B12, Folic acid , and living a good lifestyle by alcohol abstinence, prevention of body dehydration ( regularly drinking water), staying away from extremely cold area, will all help in promoting ones health.
@ op the Lord is your strength.
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|Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 2:57pm On Mar 14, 2019|
Thank you so much Leem4 for your Contribution. I really appreciate it. I must say that it's your response that has encouraged me to write this.
So I'm back in the hostel as my shift just ended. It was quite an eventful day in the Assessment Unit of Neuropsychiatry Hospital, Aro ,Abeokuta as I witnessed different forms of mental illness. And it got me wondering and making comparison..
Well, I'm thankful for life ☺ . Are you?
Peace ✌ ✌ ✌
|Re: LIVING With SCD(Sickle Cell Disease). by Nobody: 4:26pm On Mar 14, 2019|
Am a sickle cell, am 22yearz old. a dropout. at age of 10 I had priapsm. which I had erection for almost 20days later got burst at day 20. from then I.can't. av erection. I came from a poor family, a mother who care and a father who don't. we are 5 and am the only sickler. av never been to hospital b4. when I get sick or had crisis, no matter how hard it is, I will have to stay on my bed and endure. am sad. but nothing can be done. av accept my fate. I just used to console myself that I want to make heaven. coz I know there, there won't be a crisis
|Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 10:25pm On Mar 18, 2019|
Hello ismailaja. Good evening and sorry for the late response. I'm so happy that you've been able to put down your thoughts. I might not have anything to help you with but I'll love to talk to you again. Please contact me on WhatsApp on 08143505458.
Please don't live your life waiting for the cold hands of death. You're still young and can still live a productive life. Don't give up bro. Remember we're all in this together.
With love from Me.
Peace ✌ ✌ ✌
|Re: LIVING With SCD(Sickle Cell Disease). by Nobody: 6:10am On Mar 19, 2019|
|Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 11:05am On Mar 26, 2019|
Good morning beautiful people.
How are you?
I'm still at NPH abeokuta and I can't wait to get back to my room in osogbo(this place totally freaks me out). So about my health,, I've been fine, just that I feel slight pain late at night before going to bed, good news is its gone in the morning . My hip hurts too every now and then .
Tell me what's going on with you too..
We go dey alright Las Las Noni..
Feel free to call or chat me up on this number anytime. 08143505458.
Peace ✌ ✌ ✌
|Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 7:00pm On Mar 27, 2019|
Good evening people. How was your day? Hope you're fine?
I know this topic isn't strange to many of us but it will still be nice to educate others.
Priapism is the development of prolonged penile erections leading to tissue ischemia and development of functional erections in the absence of sexual arousal or desire.
Three types of priapism exist, namely ischemic priapism also known as veno-occlusive or low flow, stuttering priapism or recurrent ischemic priapism (RIP), and nonischemic priapism (arterial high flow).
Ischemic and stuttering priapisms are associated with SCD with prevalence rates of 40%.It is characterized by pain and is a medical emergency. Unlike ischemic priapism, nonischemic priapism is nonpainful and is usually secondary to unregulated cavernous arterial inflow, caused by arteriovenous fistula, iatrogenic needle injury, and pelvic trauma causing arteriosinusoidal fistula formation; it is not a medical emergency.Knowledge of priapism among SCD patients in Nigeria is poor; 74.6% of the patients had no knowledge of priapism despite a high prevalence of priapism of between 30%–40% among them. Nearly, 89% are estimated to experience priapism by the age of 20 years.
Erectile dysfunction (ED) is one of the many complications of priapism. ED is secondary to tissue ischemia and subsequent cavernosal fibrosis which is a time-dependent complication.
Blood-related diseases might contribute to priapism — usually ischemic priapism, when blood isn't able to flow out of the penis. These disorders include:
Sickle cell anemia
Other hematologic dyscrasias, such as thalassemia, multiple myeloma and others
Priapism, usually ischemic priapism, is a possible side effect of a number of drugs, including:
*Medications injected directly into the penis
*Medications used to treat anxiety or psychotic disorders
*Blood thinners, such as warfarin (Coumadin) and heparin
*Hormones such as testosterone or gonadotropin-releasing hormone
*Medications used to treat attention-deficit/hyperactivity disorder (ADHD),
*Alcohol, marijuana, cocaine and other illicit drug abuse can cause priapism, particularly ischemic priapism.
-Injury:A common cause of nonischemic priapism is trauma or injury to your penis, pelvis or perineum, the region between the base of the penis and the anus.
*A spider bite, scorpion sting or other toxic infections
*Metabolic disorders including gout or amyloidosis
*Neurogenic disorders, such as a spinal cord injury or syphilis
*Cancers involving the penis
THINGS TO DO DURING AN ATTACK
- empty bladder at the onset of the attack,
- take a warm bath.
-If an episode persists longer than 3 hours, medical attention is
Priapism or recurrence of priapism can be prevented by treating the underlying medical cause that resulted in priapism or changing medications that have priapism as their side effects. No medications should be discontinued or changed until you speak with your healthcare provider.
Dear guys, please don't feel ashamed to tell a doctor what's happening to you.
Don't put yourself at risk for impotence.
WATCH OUT FOR PRIAPISM!!!
NB; opinions and corrections are welcome.
Thank you all for reading.
Peace ✌ ✌ ✌
|Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 1:35pm On Apr 01, 2019|
Good afternoon fellas.
Happy new month to you. I pray this month brings us good health , happiness and massive love. � �
I'm quite saddened about hearing that a fellow warrior is presently at a psychiatric hospital due to substance abuse. According to my source, this 18 year old lady only uses extreme doses of pain relief medications (both tablets and injection) during her crisis and now she's being treated for addiction to these substances.
I want to implore us all to be weary of taking these pain relief drugs all the time, even at the onset of the slightest pain.
Apart from the risk of addiction related to substance abuse, we should also note that this drugs have toxic effects on our body systems which may be silent now but are more pronounced in later years.
Let's be careful.
I hope y'all have a crisis free month.
Peace ✌ ✌ ✌
|Re: LIVING With SCD(Sickle Cell Disease). by Nobody: 9:00pm On Apr 02, 2019|
Fhunkhy1:does that mean she's running mad
|Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 3:10pm On Apr 03, 2019|
She's not running mad. She's just suffering from withdrawal symptoms. I learnt she takes 19 tablets of Tramadol in a day (which amounts to 1900mg ) . It's just a case of multiple psychoactive substance abuse.
|Re: LIVING With SCD(Sickle Cell Disease). by oxypress: 5:21pm On Apr 03, 2019|
When faced with a dangerous situation of scd crisis know that hyperbaric oxygen therapy (hbot) can come to your rescue. Don't buy time with only pain killers because it will only mask the gravity of the crisis. Frequent and prolonged crisis leads to irreversible organ damage. SCD crisis is an oxygen deficit situation. The deficit is caused by blockage. The blockage is caused by sickling. The sickling is caused by hypoxia (oxygen deficit), etc, etc, etc. HBOT can block and reverse every single step of this vicious cycle. If you don't believe what I write do your research. If you ignore this information you are on your own.
The first demand in a crisis is oxygen. After oxygen other drugs will follow.
Know that the action of oxygen under pressure (hyperbaric oxygen) far exeeds 100% oxygen in the ward or emergency room. Using hbot during crisis will save you time. Pain duration can be drastically reduced. Swelling can be drastically reduced, Organ damage can be reduced or avoided.
If you think this is an advert you can embrace ignorance.
@ Fhunkhy1 the student nurse, sorry for the hip pains but hope you are aware that pains in the hips in a setting of SCD is pointing towards avascular necrosis (AVN) of the fermural joint. Already you know the implication of avn. AVN can also appear on the humeral joint or any other organ in the body. When a SCD patient is also having hip joint pains avascular necroses is knocking at the door. It is difficult to treat avn therefore it must not be allowed to set in. HBOT will be most effective way to go. For now, let me stop here.
|Re: LIVING With SCD(Sickle Cell Disease). by ezugegere(m): 6:30pm On Apr 03, 2019|
@Ismailaja, where do you reside?
|Re: LIVING With SCD(Sickle Cell Disease). by ezugegere(m): 7:19pm On Apr 03, 2019|
Avo Eri Health Foundation is an NGO located in FESTAC Town, Lagos. One of our main goals is to assist people living with SCD. For now, due to financial constraints, we able to provide Free medication, Hydroxuria to all the warriors under our care. We have about 40 taken the drugs. We also provide subsidised laboratory services to the warriors. We're hoping that in the future, as God provides, we will be able to sponsor some people to either India or Ghana for bone marrow transplant, which is the only permanent cure available now. However, any family that can raise the money (it costs about $15,000 -$20,000), we can help in securing Visa, booking hospital appointment and getting a foundation in Germany that will do the HLA and cross matching for free.
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|Re: LIVING With SCD(Sickle Cell Disease). by Nobody: 8:41pm On Apr 03, 2019|
ezugegere:Bank Olodo Ibadan
|Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 12:00pm On Apr 04, 2019|
Thank you @oxypress for the contribution.
I understand the need for oxygen therapy but it's my first time if hearing about HBOT. I'll look into it too.
Concerning my hip pain, I've been diagnosed already. There's little or nothing I can do about it for now as I've been asked to undergo surgery but couldn't do it for financial reasons. Hopefully someday I'll get it done.
I'm also aware of AVN too.
Thanks for the information Sir.
We hope to see your inputs here from time to time.
|Re: LIVING With SCD(Sickle Cell Disease). by bman2003: 6:20pm On Apr 05, 2019|
|Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 11:30am On Apr 08, 2019|
Good morning everyone. Hope you had a splendid night? So I'm back from abeokuta and back to my beautiful room in Osogbo ☺ .. Class starts today but I woke with an acute pain on the femoral head and that has made me to stay back today.
I want to tell us about another complication of SCD. Most of us would have experienced this at One point or the other. I experienced this all through my childhood and it wasn't a good experience, I literally feel my spleen moving about and causing me pain. Still happens once in a while but it's better now.
Splenic sequestration is a potentially life-threatening condition that’s most commonly seen as a complication of sickle cell disease (SCD). It happens mostly in children. The condition causes the spleen to get bigger and lowers the amount of oxygen-carrying red blood cells in the body.
The spleen is an organ in the upper left part of the abdomen . The spleen has 2 functions: it helps the body fight infection, and it helps to create and filter blood cells.But sickle-shaped cells can block blood flow through the spleen. It fills with blood and can become swollen and painful.
- Acute Pain on the left side of the abdomen
-An enlarged spleen, which can be felt through her skin
-Rapid breathing or heartbeat
-Blood transfusion :This provides the body with much needed oxygen to the cells and releases the sickled red blood cells trapped in the spleen. The spleen reduces in size and the anemia is corrected.
-Splenectomy :A splenectomy is the surgical procedure that removes the spleen.
Can one live without the spleen?
Yes. Other organs in the body perform the same function as the spleen, so a person can have a healthy life without the spleen. However, before a splenectomy, the doctor will make sure all immunizations are up to date. Afterwards, the doctor will prescribe daily penicillin for life to help decrease the risk of infection.
On a lighter mood, I want to use this medium to appreciate my awesome SPLEEN for fighting the good fight on my behalf for the past years without collapsing . It's really been a rough ride..
Ok everyone, ensure you have a wonderful day.
Thanks for reading.
Peace ✌ ✌ ✌
|Re: LIVING With SCD(Sickle Cell Disease). by bumperCA2: 12:43pm On Apr 08, 2019|
|Re: LIVING With SCD(Sickle Cell Disease). by oxypress: 7:59am On Apr 12, 2019|
@Fhunkhy1: Now that you have been introduced to HBOT for sickle cell disease see an interesting report from a SCD patient researcher: https://orlandohyperbarics.com/one-womans-experience-using-hbot/
|Re: LIVING With SCD(Sickle Cell Disease). by Zombicmodz: 1:03pm On Apr 12, 2019|
Your post made me very
I know anything I say now is like medicine after death.
But why didn't your family take you to a clinic
The lack of funds should not be an excuse to make you impotent for life.
You can never have an erection again and that is actually true.
The damage has already been done.im so sorry.
if you have SCD and you get a priapism
Please do the following:
Get someone to get you to a hospital immediately. You can be given an insulin injection that will collapse the erection immediately.
If you can't get to a hospital then do this and do it quickly
Engage in a vigorous exercise like running on the spot or jumping up and down rapidly for 10 mins. Do it like your life depends on it.
Hold your penis so that you don't feel more pain. Your penis will go limp in your hand.
Next, take a cold shower if you're not prone to cold.
Priapism of over 24 hours will render you impotent for life.
|Re: LIVING With SCD(Sickle Cell Disease). by Nobody: 7:35pm On Apr 12, 2019|
Zombicmodz:I was 10yrz old then. and my parent are ignorance, even am 23yrz now, my father can't support me for my future, he never buy a cloth for me. so how will he care about me.
|Re: LIVING With SCD(Sickle Cell Disease). by Zombicmodz: 9:30pm On Apr 13, 2019|
I'm really touched by this if you need anything within my reach call me in the signature below.
|Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 9:35am On Apr 16, 2019|
Good morning lovers.
How was your night? Mine was cool. Just that I can't seem to sleep early these days,, most times I'm awake till 2am doing nothing. I hate not having enough sleep during the night, it literally marks the day a gloomy one for me.
I'm sorry I've not uploaded anything for a while now, I've been out of data, .
Tell me how you'll be celebrating Easter.
As far as I'm concerned, I'll be in school. Not that I don't want to go home but it's a really short break and No extra cash to throw around anyway.
Thank you for reading . Have a nice Day
Peace ✌ ✌ ✌
|Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 7:30am On Apr 22, 2019|
Good morning my people.. It's been a while here. I'm really sorry for the absence. I've been dealing with serious insomnia for weeks now and it's gets me weak during the day. Emabinu simi.
I'll try my best to drop something this afternoon. .
Happy Easter � �
Peace ✌ ✌ ✌
|Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 1:05pm On Apr 22, 2019|
Sickle Cell 101: The Pain Factor
It has been almost two weeks of on off pains. It is that kind of pain which seems undecided, whether to go full circle or not and so, I have basically gone about my day to day activities, suspending some altogether but not without downing some pain killers before I step out or sleep at night.
After a day or two of some respite with me thinking the continuous pains have finally made a decision to leave me alone for the time being, the pains unleashed their fangs full force three days ago to the point that I had to close work early and head home and have been home ever since.
Maybe that sigh of relief came too fast those two days I didn't feel pain because it has been a trying few days since then. Fortunately, the pain is still at the level it can be managed at home but it was still such that I couldn't go to work for the past few days.
And here is the thing, whether we can manage the pain at home or we go screaming and land in our favourite resting place, we never get used to the pain. The worse thing you can do is ask a warrior undergoing pain crisis at that crucial moment if they still have not gotten used to the pain.
No, we DO NOT get used to the pain! What am I even saying? Does any human get used to pain? If we are made to get used to pain, Why do we talk of gaping wounds which open again and again?
Let me try an example. Imagine you like working with a knife. Chances are, no matter how careful you are, you are most likely to wound yourself again and again. And I bet, when you do, you usually always scream out in pain.. no matter how many times you wound yourself in the process of working with the knife, you never get used to the pain, the fresh wound reflex sends a signal to your brain and you scream. This is a simplification of the matter at hand but I guess, you get the gist.
Sickle Cell pain is something those living with sickle cell never get used to. No matter if we live as long as Methuselah, we do not get used to the pain. The simple reason is that no two pain episodes are the same and while this particular pain killer may work in less hours during a pain episode, the same pain killer may have zilch reaction during another pain episode. While we may go about our activities as if nothing is happening during a pain episode... the perks of living with an invisible illness.... we can sometimes, be unable to do anything during another pain episode and at worse, land in the hospital.
So yes, we try to be strong, we try to fight, we try to act sometimes as if nothing is happening while we are slowly dying inside but, we NEVER get used to the pain and instead of making statements like "I thought you would be used to the pain by now", ask yourself if you ever get used to those occasional accidental pains that come with wounding yourself with a knife or hitting your leg, toe etc somewhere and EMPATHIZE.
Pain is part and parcel of us, but it is not something we get used to.
© Doris Peter.
Happy Easter � �
Peace ✌ ✌ ✌
|Re: LIVING With SCD(Sickle Cell Disease). by oxypress: 11:33pm On Apr 22, 2019|
ismailaja:Young man there is hope.
Hyperbaric oxygen therapy (hbot) has several healing properties to correct errectile dysfunction and impotence. It did it for one of my patients.
HBOT is known to succeed where others fail. The reasons why and how can be found in my other write ups or click here: https://www.nature.com/articles/s41443-018-0023-9
|Re: LIVING With SCD(Sickle Cell Disease). by Nobody: 2:54pm On Apr 25, 2019|
oxypress:priapism is different from erectile dysfunction. after 15-20days of pain my manhood swell up and burst from the right side, which blood came out. there is mark of heal up wound there till now . some people had erectile dysfunction without experience priapism so they are different.
|Re: LIVING With SCD(Sickle Cell Disease). by Nobody: 5:51pm On Apr 25, 2019|
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