Month: February 2013

? Proteus Syndrome

Last Updated on 25/02/2013 by Vivien Ayinotu

 I came across the story of a Lady with a rare condition and how she has been able to cope positively with it.

Mandy Sellars.

  Proteus Syndrome is a very rare condition and can present in various forms.

  • It occurs as a result of genetic mutation. The affected cells continue to multiple exceedingly and produce more malformed cells.
  • This condition starts while in utero; when the baby forms during pregnancy and continues throughout lifetime
  • It does not run in families and thereby, cannot be inherited. 

In the case of this Lady, the condition extremely difficult. It was in the year 2006 that Doctors decided to name her condition as Proteus Syndrome after years of varieties of tests including DNA tests.

Her Condition

  • Her legs grew massively. 
  • At a time,  her upper body weighed 38kg while the lower part weighed 95kg. She wears only trousers specially made by her mother and outgrows them in a short duration.
  • Has had deep vein thrombosis; formation of blood clots.
  • Consequently, she was paralyzed for few weeks.
  • Developed Sepsis;Infection of the blood
  • Suffered kidney failure
  • Had MRSA; Methycillin-Resistant Staphylococcus Aureus( a bacterial  infection).
  • Later, her infected left leg was amputated.
  • Unexpectedly, the stump grew out of proportion when compared to her right leg. It’s width went up to 2m i.e same as a size 34.

Her Lifestyle

She is a very cheerful person and enjoys having fun despite her condition. Her parents have been there for her and had given her all the care and support she needed. She said she has always got anything she asked for and only got to knew how about how abnormal she is during her teens.

She has a degree in Graphic Design and Psychology and has studied courses such Sociology, Criminology, Sign Language and Mediation. In addition, She has worked voluntarily in different fields. She lives alone though family and close friends always pop in to know how she is faring.

She has a specially designed wheelchair and a special car. And does cooking, washing and cleaning by herself.
As a very independent and optimistic person , she hopes one day there would be a cure for her condition.

According to her, her condition do not affect her love life as she has previously been in two long-term relationships. She enjoys hanging out with friends and going places.

However, she has always feared she could be bedridden by the time she turns 85 years if her condition worsens.

Hope

Following a  recent DNA test and researches, a drug has been identified which could help her shrink her legs. She has commenced it and within  three months a significant improvement was noticed.

For the first time, X-ray showed the size of her legs were reducing rather than its usually increase.
She had noticed that because her trousers fits her properly and her mother has not made new ones but waited patiently to hear from the health experts. She and her parents were thrilled on hearing the news, just like they were the day they heard a tiny drug could do the job.

Hopefully in the next couple of years there would be a tremendous reduction in her legs.

Rapamycin

This is a drug commonly used to prevent organ and bone marrow transplants rejection.

It is found  to be very useful in Mandy Sellars case as it stops a specific protein that is involved in cell division. Nevertheless, its side effects include lung toxicity and increased risk of cancer.

 Lastly, in some sufferers, this abnormal body enlargement could be seen in the abdomen, around the chest and on the hands. Other signs and symptoms can be present, depending on sites affected. Follow @AyinotuV

Woman I Met on a Bus

Last Updated on 01/12/2017 by Vivien Ayinotu

 

It was a journey of about six hours but due to the traffic, stops and bad roads, it lasted longer than required.  I was travelling to Lagos from the east, Onitsha to be precise. Without wasting much time many passengers bordered the luxurious bus and the journey began.

A friend had warned me earlier about the ill-occurrences that take place on the roads especially around this time of the year and encouraged me to fly rather than using the roads. He listed many cases of theft, rape and killings happening on the highway lately. Funny enough, a relative said a similar thing to me. I thought about the time and inconvenience regarding getting myself to the nearest airport which is in Owerri and far from my hometown. Meanwhile, I have already made arrangement with a local Driver to travel with him on that day.
So, bearing all these on my mind I decided to pray as long as I can throughout the journey. I said the rosary and kept repeating it till I lost count of how many decades I had actually said. However, I recall a woman sitting beside me kept staring at me and later joined me. Surprisingly to her,  she has completed five decades and am still reciting mine. She glanced at me once more and gently folded her rosary and put it inside her bag.
When we got to Benin, there was a brief stop; time for Lunch, stretching and restroom. Few minutes later, we got back to the bus. I was holding my rosary once more but this time I was interrupted. She asked ‘are you still praying?’  and I answered ‘yes’. She didn’t go further and I then asked her if anything was the problem that I can actually talk.
Huh! That was how I said bye bye to my marathon prayer session, not knowing I have said enough to see me through the journey. Hahaha!
She asked me where am from?
       My family,what I studied, my job…
       My relationship status…
       My plans for the future…
And I answered very well. Yes! Honest answers.
It was during this question time that I really noticed the personality sitting beside me. This woman was so lovely. Her looks, height, stature and the way she talked can be likened to that of one of my favorite aunt( Aunt Dora),and I mentioned that to her too.
I noticed that in between talks her husband calls came in and they kept making jokes about how he was missing her and how he was going to leave before time to make sure he doesn’t keep her waiting after the long journey. If my guess is right, she should be in her mid-fifties or there-about, am not that wonderful in guessing ages right by mere looks. She had been away for a week to look after her mother-in-law.

It was now her turn to do most of the talking. She told me to never underestimate prayers and went on and told me how God has been faithful to her.  I was very lucky to have such a caring man as a husband and from her persistent phone calls, their love remained evergreen. She smiled and said that she deserved it, that marriage is not as easy as it looks.

Back in her teens as a student, she mistakenly fell pregnant for a man that showered her with lots of gifts and promised her marriage. Initially, she was worried that her parents would not be happy and she would like to complete her secondary school education first. It was actually her first time of having sex and she got trapped. It made her see her whole dream of better life crumbling before her. When she broke the news to the man he wasn’t even surprise and told her where she would go for an abortion and made the necessary arrangements. She was shocked but did not allow him know how she felt.

She started praying to God, made all sorts of promises if she happens to come out alive after going under the knife and still be fertile. That day came and pass. At the clinic she got to know that her lover was a regular,  always bringing in different girls. She never contacted him again and that was how their story ended. She told no one about it, not even her mother or close friends. And has not mentioned it to her loving husband, who sees her as the best.

On completion of her studies, she went on holiday and met a man that couldn’t take his eyes off her. He has already met her Uncle and made his intentions clear, so it was not hideous this time, though she was yet to tell her parents. Her parents consented when they heard about it, traditional marriage rites were carried out and she took in for this man. Her parents were not happy as they wanted it to be after the impending white wedding as they were staunch Catholics but she was overjoyed knowing that her womb was not damaged after-all.   The religious perspective meant nothing to her, knowing her ordeal. She then left her family house and joined her husband.

Later, they had a white wedding following her delivery. Her husband trained her in the University and she now owns a Secondary School in Lagos. They are blessed with Three boys.

In regards to her loving husband, she said they have been very supportive of each other. According to her, some years back her marriage was not that lovely as it is now. There was a time her husband kept late nights and talked to her like she meant nothing to him. She was confused but never allowed that affect her work because she needed to be there for her kids no matter what. She sought advice and got different versions but only an Elderly woman encouraged her to be herself and should still care for her husband and not even raise her voice towards him. It was so difficult for her and most times she ended up challenging her husband because she is human and as it was in tune with advice from other numerous sources.

Her situation got worse and close friends were becoming aware of her condition. She got tired of complaining to any one. She ran into the same old woman who wanted to know how she was faring and she told her how her marriage has deteriorated and how she was not able to do exactly as she told her. The woman told her that she never said it was going to be very easy but that was all she needed to do to redeem her marriage. She made her understand that with such attitude and prayer her husband will come back to his senses soon while hostility will drive him further away and make him jump to conclusions.

Amidst these trial period, she loved and missed her husband. She pulled herself together and this time took this woman’s advice wholeheartedly. She welcomes him, be it midnight or 2 am, helps him remove his clothes, if he is willing to eat fine, if he isn’t, she will gently send her food back to the kitchen. She continued this way and was almost getting used to the routine, when her husbands character gradually started changing as though it was magic. He began chatting her up and coming home on time, till one day he was able to narrate to her how another woman almost destroyed their marriage.

She explained to me how her husband would prefer to borrow money from outsiders for business to make her see him as man of the house but those days are gone with the wind as no one knows how they handle their affairs any more. She made her husband understand that he trained her and her money is simply his. With God on her side, school business in Lagos is very lucrative and being the hardworking type she has been able to get sponsorship from Cowbell and the likes.

They started assisting each other financially, spiritually and all the -lly’s you can think of.  Her husband’s business booms and they both live comfortably and very happy. Above all, they turned out to be best friends and are inseparable.

She did not forget to tell me that some of their friends and even few relatives were not happy with their progress. Besides, there is no word in her dictionary like ‘close or best friend.’ Her husband is now her all-in-one. She also mentioned how vital sex is in marriage, owing to the fact that men love sex and how she continually prays for Gods grace upon her family.

Remember, we were still in the bus. She alighted at Berger and I tiredly started looking around through the window  to the lovely views of Lagos. The journey was a very long one but I enjoyed it.

Lastly, I thank God for a smooth and safe journey.

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Being Patient.

Last Updated on 08/02/2013 by Vivien Ayinotu

Amidst the struggles in life
Always be patient and keep faith.

At times, it can be very difficult trying to be patient.
There are moments we seem to be eaten-up by the silence of patience.
But what happens when you try to push and worsen the situation?

It is not always easy being on a queue.
Especially, when you do not know:
How long it will last,
The length of the queue,
And when there is no known time-frame for each participant,
Or perhaps if there could be any disruption.

Most times, we might wish we are on the fast lane,
Not knowing what the future has in stock for us.
We might wish we have the power to take others off our way
Not realising the fact that their time might not be appropriate for us.

Some people bear Patience- Ndidiamaka in my mother tongue
Is that an indication that they are truly endowed with this divine virtue?
Does the word reflect on their life experiences?
I wish I can answer that or you can tell better…

All you have to do is to exercise patience
Because God is in control and only His will comes to pass.

Breathe in faith, breathe out doubts.
Patience is a virtue.


Tiny Left Toe.

Last Updated on 02/02/2013 by Vivien Ayinotu

I came across a leg condition and want to talk about it.

Please for my friends who may not have appetite for reading certain  health issues, I apologise.

A close relative of mine have been having some discomfort on his left tiny toe for years now which seems to be recurrent; as it heals over time and comes back whenever it wills.

Initially, he thought it could be from the kind of shoes he wear and tend to have loads of variety now but none was deemed fit by this tiny toe. It kept disturbing.

How it starts
He simply notices a bit swelling of the foot especially very close to the last toe.
It builds up as each day passes by and so does its pain intensity as it looks as though it is stretching the skin and compressing some nerves as well. And of utmost importance reducing blood supply to the affected area.

In matter of days, it bursts from the region that attaches the tiny toe to the rest of the foot.
Sometimes,  it could be clear fluid and other times it turns out to be purulent- containing pus I mean.

The worst of all, is that it is very painful and pain-killers like paracetamol doesn’t do the job except the likes of Ibuprofen or codradamol.

These phases last and for a while and then gradually subside and appear healed.
Although some home remedies were always of help.
For instance: Applying of hot compress
                    Washing the area properly twice a day
                    Applying antibiotic.

But it does not heal completely in the inside as it re-appears in about a month time or a bit longer.

After so much antibiotics prescriptions by GPs
Many episodes
It was time to hit the hospital.

Interestingly to me, I learnt that at the hospital most doctors did not know about the condition and were kind of seeking each others opinion till an Indian doctor came by and called it ‘AINHUM’.  And it remained Ainhum.

It was time for X-ray and MRI which actually confirmed diagnosis and show the extent of damage done.
Then, Specialists took over.

His case never got this bad anyway.

Treatment
In hospitals, it is mainly by surgery either to link the connecting bone properly or to cut off the tiny toe.

I guess you now know what Ainhum is and looks like. It is on the tiny toe but can never be ignored.
You know what to do for more information. Before I forget, it was a bit hardwork writing this without medical jargons and structure.