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7KH QHZVOHWWHU RI WKH 3ULPDU\ ,PPXQRGHÀFLHQF\ 1HWZRUN RI 6RXWK $IULFD April 2014 Networker “2 013 was a great year for us. The year was marked with events such as the ASID conference, ĨƵŶĚƌĂŝƐŝŶŐ ĂĐƟǀŝƟĞƐ ĂŶĚ ĂŶ ŝŶĐƌĞĂƐĞ in membership. Membership numbers increased by 16 to 107! The year ended Žī ǁŝƚŚ :ŽLJ ZŽƐĂƌŝŽ ŵĞŵďĞƌ ŽĨ ƚŚĞ /WKW/ ;/ŶƚĞƌŶĂƟŽŶĂů WĂƟĞŶƚ KƌŐĂŶŝƐĂƟŽŶ ĨŽƌ WƌŝŵĂƌLJ /ŵŵƵŶŽĚĞĮĐŝĞŶĐLJͿ ďŽĂƌĚ ĂŶĚ ŶŝŶĞ ĚŽĐƚŽƌƐ ĨƌŽŵ ^ŽƵƚŚ ĨƌŝĐĂ ;ŝŶĐůƵĚŝŶŐ ƌ ƐƐĞƌͿ ĂƩĞŶĚŝŶŐ ƚŚĞ ϭƐƚ ŝŶƚĞƌŶĂƟŽŶĂů WƌŝŵĂƌLJ /ŵŵƵŶŽĚĞĮĐŝĞŶĐŝĞƐ ŽŶŐƌĞƐƐ ;/W/Ϳ ĐŽŶĨĞƌĞŶĐĞ ŝŶ WŽƌƚƵŐĂů WŝE^ ŚĂĚ Ă ǀŝƐŝďůĞ ƉƌĞƐĞŶĐĞ ƚŚĞƌĞ ǁŝƚŚ ƚŚĞ ŽƌŐĂŶŝƐĂƟŽŶƐ ŇLJĞƌƐ ĂŶĚ ŶĞǁƐůĞƩĞƌƐ ĚŝƐƉůĂLJĞĚ Ăƚ ƚŚĞ ĐŽŶĨĞƌĞŶĐĞ /ƚ ǁĂƐ ǀĞƌLJ encouraging to see so many doctors ĨƌŽŵ ^ŽƵƚŚ ĨƌŝĐĂ ĂƩĞŶĚ ƚŚĞ ĐŽŶĨĞƌĞŶĐĞ ʹ ƚŚĞ ŵŽƌĞ ĂǁĂƌĞŶĞƐƐ ŽĨ WƌŝŵĂƌLJ /ŵŵƵŶŽĚĞĮĐŝĞŶĐLJ ǁĞ ŚĂǀĞ ƚŚĞ ďĞƩĞƌ ƚŚĞ chance of proper diagnosis and treatment ĨŽƌ ^ŽƵƚŚ ĨƌŝĐĂŶ ƉĂƟĞŶƚƐ tĞ ƐƚĂƌƚĞĚ Žī ϮϬϭϰ ǁŝƚŚ ŽƵƌ 'D Ăƚ ǁŚŝĐŚ ǁĞ ǁĞƌĞ ƉůĞĂƐĞĚ ƚŽ ǁĞůĐŽŵĞ ƚŚƌĞĞ ŶĞǁ ŵĞŵďĞƌƐ ƚŽ ŽƵƌ ĐŽŵŵŝƩĞĞ ĂŶŝĞůůĞ 'ƵŝŐŶĞƚ ,ĞŝĚŝ ,ƵĚƐŽŶͲĞŶŶĞƩ ĂŶĚ ŚĂŶƚĞůůĞ ZŝĐŚĂƌĚƐ tĞ ƚƌƵůLJ ĂƉƉƌĞĐŝĂƚĞ ƚŚĞŝƌ ǁŝůůŝŶŐŶĞƐƐ ƚŽ ƐĞƌǀĞ ƚŚĞ W/ ĐŽŵŵƵŶŝƚLJ ǁŝƚŚ ƚŚĞŝƌ ƟŵĞ ĂŶĚ ĞīŽƌƚƐ ĂŶŝĞůůĞ ŚĂƐ ĂůƌĞĂĚLJ ďĞŐƵŶ ŚĞƌ ǁŽƌŬ ǁŝƚŚ ƚŚĞ WŝE^ &ĂĐĞŬ ƉĂŐĞ ^ŚĞ ƌĞŐƵůĂƌůLJ ƉŽƐƚƐ ŝŶĨŽƌŵĂƟǀĞ ĂŶĚ ŝŶƐƉŝƌŝŶŐ ĐŽŶƚĞŶƚ /Ĩ LJŽƵ ŚĂǀĞŶƚ ĨŽƵŶĚ ƵƐ ƚŚĞƌĞ ĂůƌĞĂĚLJ ƉůĞĂƐĞ ŐŽ ĂŚĞĂĚ ĂŶĚ ůŝŬĞ ŽƵƌ ƉĂŐĞ ƐŽ ƚŚĂƚ ǁĞ can stay in touch. WůĂŶƐ ĨŽƌ tŽƌůĚ W/ tĞĞŬ ;ǁŚŝĐŚ ƌƵŶƐ ĨƌŽŵ ƚŚĞ ϮϮ ƚŽ Ϯϵ Ɖƌŝů ϮϬϭϰͿ ĂƌĞ ĐƵƌƌĞŶƚůLJ ƵŶĚĞƌǁĂLJ dŚĞƌĞ ĂƌĞ ĞǀĞŶƚƐ ƉůĂŶŶĞĚ ŝŶ 'ĂƵƚĞŶŐ ĂŶĚ ƚŚĞ tĞƐƚĞƌŶ ĂƉĞ ŵŽƌĞ ĚĞƚĂŝůƐ ŽĨ ƚŚŝƐ ĐĂŶ ďĞ ĨŽƵŶĚ ŝŶ ƚŚĞ ƌĞƐƚ ŽĨ ƚŚĞ ŶĞǁƐůĞƩĞƌ tŽƌůĚ W/ tĞĞŬ ŝƐ Ă ĨĂŶƚĂƐƟĐ ŽƉƉŽƌƚƵŶŝƚLJ ĨŽƌ ƵƐ Ăůů ƚŽ ŝŶĐƌĞĂƐĞ ĂǁĂƌĞŶĞƐƐ ĂďŽƵƚ ƚŚĞ ŝůůŶĞƐƐ ĂŵŽŶŐƐƚ ŽƵƌ ĨĂŵŝůŝĞƐ ƚŚĞ ŐĞŶĞƌĂů ƉƵďůŝĐ ĂƐ ǁĞůů ĂƐ ŵĞĚŝĐĂů ƉƌĂĐƟƟŽŶĞƌƐ ŝŶ ŽƵƌ ĐŽŵŵƵŶŝƟĞƐ WůĞĂƐĞ ƐĞŶĚ ƵƐ ƉŝĐƚƵƌĞƐ ĂĐĐŽŵƉĂŶŝĞĚ ďLJ Ă ƐƚŽƌLJ ŽĨ ǁŚĂƚ LJŽƵ ŚĂǀĞ ĚŽŶĞ ĂŶĚ ǁĞ ǁŽƵůĚ ůŽǀĞ ƚŽ ƐŚĂƌĞ ƚŚŝƐ ǁŝƚŚ ŽƚŚĞƌƐ ŝŶ ŽƵƌ ŶĞdžƚ ŶĞǁƐůĞƩĞƌ /Ŷ ƵŐƵƐƚ ƚŚŝƐ LJĞĂƌ ƌ DŽŶŝŬĂ ƐƐĞƌ ǁŝůů ďĞ ƉƌĞƐĞŶƟŶŐ ƚŚĞ ϱƚŚ ĨƌŝĐĂŶ ^ĐŚŽŽů ŽĨ W/ ǁŚŝĐŚ ǁŝůů ƌƵŶ ũƵƐƚ ďĞĨŽƌĞ ƚŚĞ >>^ conference in Durban (which you can read ŵŽƌĞ ĂďŽƵƚ ŝŶ ƚŚŝƐ ŶĞǁƐůĞƩĞƌͿ KŶĞ ŽĨ ƚŚĞ ǀĞƌLJ ĞdžĐŝƟŶŐ ƉůĂŶƐ ĨŽƌ ƚŚĞ ƐĐŚŽŽů ŝƐ ƚŽ ĞůĞĐƚ Ă ĐŽŵŵŝƩĞĞ ŽĨ ƐƉĞĐŝĂůŝƐƚƐ ƚŽ ƐƚĂƌƚ ǁŽƌŬŝŶŐ ŽŶ ŐƵŝĚĞůŝŶĞƐ ĨŽƌ ƚƌĞĂƟŶŐ W/Ɛ ŝŶ ^ŽƵƚŚ ĨƌŝĐĂ dŚŝƐ ĚŽĐƵŵĞŶƚ ǁŝůů ŐŝǀĞ ƵƐ ŵƵĐŚ ŶĞĞĚĞĚ ŝŵƉĞƚƵƐ ǁŚĞŶ ĚĞĂůŝŶŐ ǁŝƚŚ ƚŚĞ ĞƉĂƌƚŵĞŶƚ ŽĨ ,ĞĂůƚŚ ŽƵŶĐŝů ĨŽƌ DĞĚŝĐĂů ^ĐŚĞŵĞƐ ĂŶĚ ŝŶĚŝǀŝĚƵĂů ŵĞĚŝĐĂů ƐĐŚĞŵĞƐ ŝŶ ŶĞŐŽƟĂƟŶŐ ƚŚĞ ĂƉƉƌŽƉƌŝĂƚĞ ƚƌĞĂƚŵĞŶƚ ĨŽƌ our members. ϮϬϭϰ ƉƌŽŵŝƐĞƐ ƚŽ ďĞ ĂŶ ĞdžĐŝƟŶŐ LJĞĂƌ ĨŽƌ WŝE^ WůĞĂƐĞ ŬĞĞƉ ŝŶ ƚŽƵĐŚ ;ĞŵĂŝů ƉŝŶƐĂŚĞůƉΛŵǁĞďĐŽnjĂ Žƌ ƚŚƌŽƵŐŚ ŽƵƌ &ĂĐĞŬ ƉĂŐĞͿ ĂŶĚ ůĞƚ ƵƐ ŬŶŽǁ ŚŽǁ ǁĞ ĐĂŶ ƐƵƉƉŽƌƚ LJŽƵ Busy year ahead for PiNSA EĞǁ ĐŽŵŵŝƩĞĞ ŵĞŵďĞƌƐ Ă W/ ƐĐŚŽŽů ĂŶĚ tŽƌůĚ W/ tĞĞŬ ĂĐƟǀŝƟĞƐ ĂƌĞ ƐŽŵĞ ŽĨ ƚŚĞ ƚŚŝŶŐƐ ƚŚĂƚ ĂƌĞ ŬĞĞƉŝŶŐ WŝE^ ďƵƐLJ :Ed 'Z WŝE^ ŚĂŝƌ ƌĞƉŽƌƚƐ ďĂĐŬ T ŚĞ /ŶƚĞƌŶĂƟŽŶĂů WĂƟĞŶƚ KƌŐĂŶŝƐĂƟŽŶ ĨŽƌ WƌŝŵĂƌLJ /ŵŵƵŶŽĚĞĮĐŝĞŶĐŝĞƐ ;/WKW/Ϳ ŚĂƐ ŝŶǀŝƚĞĚ ŶŽŵŝŶĂƟŽŶƐ ĨƌŽŵ WŝE^ ĂŶĚ ŽƚŚĞƌ ŶĂƟŽŶĂů ŵĞŵďĞƌ ŽƌŐĂŶŝƐĂƟŽŶƐ ĨŽƌ ƚǁŽ ŝŶƚĞƌŶĂƟŽŶĂů ĂǁĂƌĚƐ ƚŚĞ >ƵĐŝĂŶŽ sĂƐƐĂůůŝ ǁĂƌĚ ϮϬϭϰ ĂŶĚ ƚŚĞ Žď >ĞŝĞŶ ǁĂƌĚ ϮϬϭϰ The Luciano Vassalli Award was ĞƐƚĂďůŝƐŚĞĚ ŝŶ ŵĞŵŽƌLJ ŽĨ >ƵĐŝĂŶŽ sĂƐƐĂůůŝ ǁŚŽ ŚĂĚ Ă ŐƌĞĂƚ ŝŵƉĂĐƚ ŽŶ ƚŚĞ ƉƌŝŵĂƌLJ ŝŵŵƵŶŽĚĞĮĐŝĞŶĐLJ ǁŽƌůĚ ŝŶ ŚŝƐ ƐŚŽƌƚ ůŝĨĞ dŚŝƐ ĂǁĂƌĚ ƌĞĐŽŐŶŝƐĞƐ Ă LJŽƵŶŐ ƉĞƌƐŽŶ ;ŵĂdžŝŵƵŵ ĂŐĞ ϮϱͿ ǁŚŽ ŚĂƐ ŵĂĚĞ Ă ĚŝīĞƌĞŶĐĞ ƚŽ ƚŚĞ ǁŽƌůĚ ŽĨ ƉƌŝŵĂƌLJ ŝŵŵƵŶŽĚĞĮĐŝĞŶĐLJ The Bob LeBien Award was ĞƐƚĂďůŝƐŚĞĚ ŝŶ ŚŽŶŽƵƌ ŽĨ Žď >ĞŝĞŶ ǁŚŽ ŚĂĚ ƚŚĞ ǀŝƐŝŽŶ ƚŽ ŝŶŝƟĂƚĞ ƚŚĞ ĐƌĞĂƟŽŶ ŽĨ /WKW/ ĂŶĚ ƚŚĞ ĐŽŵŵŝƚŵĞŶƚ to serve as the founding chairperson. /ƚ ŝƐ ĚĞĚŝĐĂƚĞĚ ƚŽ ĂŶ ĂĚƵůƚ ǁŚŽ ŚĂƐ ŝŵƉƌŽǀĞĚ ĐŽŶĚŝƟŽŶƐ ĨŽƌ ƉĞŽƉůĞ ǁŝƚŚ Ă ƉƌŝŵĂƌLJ ŝŵŵƵŶŽĚĞĮĐŝĞŶĐLJ ŝŶ ŚŝƐŚĞƌ ŽǁŶ ĐŽƵŶƚƌLJ Žƌ ŝŶƚĞƌŶĂƟŽŶĂůůLJ EŽŵŝŶĂƟŽŶƐ ĨŽƌ ƚŚĞƐĞ ĂǁĂƌĚƐ ŵƵƐƚ ďĞ ƐƵďŵŝƩĞĚ ƚŚƌŽƵŐŚ WŝE^ ƚŽ /WKW/ ďĞĨŽƌĞ ϯϬ Ɖƌŝů ϮϬϭϰ Ăƚ ƚŚĞ ůĂƚĞƐƚ WůĞĂƐĞ ĐŽŶƚĂĐƚ :ŽLJ ZŽƐĂƌŝŽ ĨŽƌ ŵŽƌĞ ŝŶĨŽƌŵĂƟŽŶ Žƌ ƚŽ ƉƌŽƉŽƐĞ Ă ŶŽŵŝŶĂƟŽŶ INTERNATIONAL NETWORK Recognising people who make a difference in the PI world

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7KHQHZVOHWWHURIWKH3ULPDU\,PPXQRGHÀFLHQF\1HWZRUNRI6RXWK$IULFD
April 2014
Networker
“2013 was a great year for us. The year was marked with events such as the ASID conference,
in membership. Membership numbers increased by 16 to 107! The year ended :Z/WKW/ /WK W/ ^ W/ /W/WWE^ / encouraging to see so many doctors ^ W / chance of proper diagnosis and treatment ^ t'D
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can stay in touch. WtW/t
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^ W/>>^ conference in Durban (which you can read K W/^ d ,D ^ our members.
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Busy year
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The Luciano Vassalli Award was
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The Bob LeBien Award was
> /WKW/ to serve as the founding chairperson. /
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INTERNATIONAL NETWORK
2
^ ^ d/ ^ , pneumonia. I started asking our paediatrician / she was a bit premature, and because she was , // /'
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The doctor did not seem to think that these further tests or treatment. When she was / a second set of grommets and she came down t this stage. She had stopped gaining weight t defects as she has a heart murmur. She was /s/' , t
The month before she turned two she d t d /
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so we increased her dose and shortened the ^ K

Our stories
3
tD / / / permanent. :
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, idea why it was happening. The reasons given were due to the fact that he was d dd
tK we gained a support system. Ethan was 'W <, under his care, he started to do some further research. /
,/ ^, , referred him to Dr Monika Esser. Ethan was diagnosed on 3 September 2012 with ,/^
Ethan’s storyEthan’s story
Our stories
By Chantelle Richards
& t to guide us in these important decisions.
issues that have come up due to the trauma
of repeated admissions and everything that captures the hearts of those around her!
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was wrong or why this was happening we t him on maintenance therapy, which a day. Since Ethan was diagnosed he has , diagnosed.
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t keep you updated.
Above: Ethan, 17/07/2008 >
Q: ‘Subcut’ of ‘SCIG’ has become W/ in South Africa. What are its advantages?
A:^/' /' h /s/'d ^/' ,
Q: Are all Subcut/SCIG products registered and will medical aids pay for their use?
A:D^> ^ / E/
Y, to be making use of SCIG/subcut? A:K^ W/ /'/s/', /s/' d ^
Y' becoming more accessible. Do you think it will be more available and ^ near future?
A:' W/ / d^h D& ,'^ /^d,
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Q: Why is the PID Register so important?
A: W/ W/ & / W/^ W/ ,/sd t It is obvious from the current data that the are not being diagnosed and do not access W
New treatment
available in
South Africa
Medical FAQs
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©PiNSA 2014
Indemnity /WE^ WE^ from treatment, or treatment that may be suggested or prescribed for a member or non member by any other WE^
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>^/^ WE^ WE^ W/ & ^/ WE^
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Contribute to PiNSA’s
Networker newsletter
dWE^E is edited and WE^t D Wd
South Africa at first
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5
Immunodeficiencies planned for Durban
You are invited to the tW/t
With talks by Dr M. Esser (Chair of the PiNSA Medical Advisory Panel) and
Dr P. Sinclair (Paediatrician).
Drinks and snacks will be served.
t>sW, Conference Room, Alexandra Road,
Pinelands, Cape Town