Serious stuff

Every time I think about my blog, there is always a sense of guilt because I used to be so much better at updating it usually with stuff I made.  But the last months have been busy and difficult although I know it is a poor excuse.  There was the unexpected trip back to Nigeria and after that I had some freelance work to do (yet another source of guilt since I could not justify a pleasure such as sewing knowing that a heavy deadline was looming).  Somehow, the 1st draft of the manuscript is written so I could go to San Antonio (last week) without worrying too much about the fate of the manuscript.  So I'll blog about San Antonio.

I was attending a congress devoted to Breast Cancer where investigators and researchers were showing their most up to date data on screening, diagnosis and treatments.  There were many Pharma companies with booths.  What surprised me most was the strong presence of Breast Cancer Advocates/lobbyist.  Although I have attended many scientific congresses in the past, I have never come across patient groups.  Maybe it is a reflection of the changing times but I think this has a lot more to do with Breast Cancer patient groups who have done such a fantastic job in enhancing public awareness, fighting governments for access to treatments etc.  There is even breast cancer awareness month (October) and many products now have the well known pink ribbon as a logo showing their support by donating part of the proceeds from sales.  Most of the people I met were breast cancer survivors and I will tell you about two with whom I spent some time.

I met Susan, a lady in her late 40s - early 50s who has had a double mastectomy.  She began to look into her family history where several 1st degree relatives have also suffered gynaecological tumors. She became aware of a genetic link and went for screening for the BRAC1 gene for which she was positive.  (A mutation of the BRCA1 mutation is known to be associated with some gynae tumours, most commonly breast and makes cells more resistant to programmed death).  Since then, she actively supports a patient group which provides genetic counselling for those who wish to know their 'status'.  I met her 23 year old daughter.  What is intriguing is that her daughter has undergone a preventative double mastectomy knowing that she carries the BRCA1 gene and has a family history of BC.  In fact she told me that she went for a mamogram recently where the results were not clear.  Rather than wait, she decided to go ahead and have both breasts removed.  I must say that I felt like crying when I saw Susan and her daughter and I could not bear to think of their pain in making what must have been a v hard decision.  In Susan's family, several female members have undergone radical preventative surgeries including removal of both breasts, uterus and ovaries.  Her job now is to inform people to look into their family histories and be aware of their genetic risks.  What a remarkable lady, what an amazing daughter, what a great job she is doing.

The other lady I met is Phillipa, a 50 year old Ugandan who lives in Texas.  Her sister died in 1986 from BC and in 1993 she felt a small lump in her breast.  After undergoing several tests which all turned out negative, she nevertheless insisted on a biopsy, despite the reassureance from her physician that all was well.  To cut a lng story short, she was diagnosed with BC and thanks be to God she is a long term suvivor being cancer-free for 15 years.  Philippa is a full time teacher but took time out to attend the congress since she has just started a group which aims to provide education, screening and treatment facilities for women in East Africa.  Again, my eye watered as she told of people she has met back in her home country whose plight was totally hopeless due to lack of treatment.  In fact she told me that Uganda does not have oncologists.  I accompanied her as she approached several Pharma companies; she is a self made advocate and I pray that she will achieve great things.

So my trip to San Antonio was definitely a great experience but one also for sober reflection.  I learnt so much in 3 days than in the past year working on one of our BC drugs.   Seeing BC survivors helps me put into perspective that what I do in my everyday job can hopefully make a difference in some lives. I am thankful for having good health but I am burdened knowing that there are so many people out there, including many in developed countries, who do not have access to good healthcare.  It is hard to know where to begin.  Of course, I have to do my bit and I will also pass on the info on Phillipa's group (which is v much in its infancy and in dire need of funding/support) to my company.

Comments

[auto glass mesa az]

Thanks for getting out there and doing the foot work. What an eye opening experience for you. Take care.

[erica]

It is great work that you do Aima. I enjoyed reading your story. On a less-serious note. I have tagged you. Check out my blog for details.
~Craftyblossom

[melissa sews]

I'm glad that you had a good trip, Aima. It sounds like you've been very busy and very productive. I understand how it feels to miss your crafting time. For me, crafting and blogging are therapy. Unfortunately, that time is usually the first to go when things get hectic - just when you need therapy the most! It's good to hear from you.

God's Peace,
Melissa

[Levin]

Welcome back, Aima!