Patient-Achievers helping other patients with Advice

Dear Ms. Hamilton,
 
My apologies for not writing sooner.  I have not checked my e-mails in several days.  Below are a few points which come to mind immediately.  I shall be 60 in June.
 
As long as you feel unwell and have pain in your spleen or any other part of your body, I would avoid flying until your health problems are dealt with.  There is nothing like preventing a sickle cell crisis as a crisis is a miserable and unbelievably painful experience.
 
Drink two to three liters of water each day, avoid alcohol, do not eat heavy meals (prefeably four or five lighter meals a day), and do not have your last meal too late at night, keep your body weight down,  stay well rested, never exhaust yourself, do gentle exercise, walk.  Always dress warmly; even in hot weather, carry a light shawl around with you to protect you from sudden exposrue to cool draughts and air conditioning.
 
Your eyes need to be checked regualrly (i.e. approximately every six months) to make sure that you do not have any bleeding into the retina.  Unfortunately, this is a problem we 'SC' patients suffer from.  If blood vessels in your eyes rupture during a trip, you will most porbably not be able to fly home for medical care so it is extremely important that you should be in good health before flying.
 
I have found it extremely helpful to own a copy of “The Sickle Cell Disease Patient” by Dr Konotey-Ahulu, and I encourage doctors to have a copy on their bookshelves.  I also refer them to his website www.konotey-ahulu.com  We need to know our bodies and about our ailment so we can educate doctors as only too few know about it.   
 
I have learned from Dr. Konotey-Ahulu that there is a big difference between managing a patient and treating a disease. 
 
You can help any open-minded, receptive general practitioner who does not know much about sickele cell disease to manage you correctly.
 
Please ask Dr. Konotey-Ahulu what blood tests you should have.  My spleen has disappeared – if I remmeber rightly, it was overworked fighting infections.  Every three years or so I have a “pneumovax” shot and, at the beginning of winter, take a course of medication to make my immune system react quickly whenever I have an upper respiratory tract infection. 
 
A few drops of Aerobic Oxygen (stabilised oxygen) in a glass of water about three times a day is very helpful.  It is not sold in the US but can be ordred from Canada.  As I do not have the address within reach at the moment, I shall send it to you tomorrow.
 
All that I have learned about managing my problems with sickle cell disease has been thanks to Dr. Konotey-Ahulu.  My using Aerobic Oxygen is also thanks to him.
 
China and Australia will be well within your reach if you are in good health. 
 
Please spend a couple of years looking after your health then plan your trips with the necessary days of rest well below an altitude of 2000m.  The correct  and constant air pressure on board an aircraft is also important, particularly on long-haul flights.
 
I live in Geneva, Switzerland.  A small group of us is reaching out to other sicke cell patients in Geneva and forming a suport group as there are misconceptions and errors in treatment that are repeated.  We patinets need to know our bodies and be firm with doctors.  In the long run, they respect us for our knowledge and many of them are grateful to us for helping them improve our health.
 
If you know of any other sicke cell patints in Fort Lauderdale, you may wish to form a support group.
 
With best wishes,
Mawunu 

felix Konotey-Ahulu <admin@sicklecell.md> wrote:

Dear Judith
 
Thanks for writing. I'm off somewhere at the moment so I cannot respond in detail to your letter. 
 
Where are you? What do you do?
 
I'm copying your letter to a super lady who can help you. Her name is Mawunu Chapman Nyaho.
 
Meanwhile, go to my website www.konotey-ahulu.com
 
On the Home Page you will find on the right hand side 'PUBLICATIONS'. Click on it. That brings you to a page with dates from 1965. Scroll down the years to the Year 2001. Read all 4 articles listed in that year before getting back to me.
 
Felix Konotey-Ahulu
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