Cystinosis Support Group South Africa Page 9. is, moet uit die lisosome vervoer word want dit kan weer gebruik word deur die liggaam.
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1 Cystinosis Support Group South Africa Page 9 Cystinose: Die mees gewildste vrae Hierdie artikel is vertaal vanuit die (Nephropathic Cystinosis : A Guide for Parents, Patients and Healthcare professionals) W at is cystinose? Cystinose is 'n metaboliese siekte wat gekarakteriseer is deur 'n opeenhoping van die aminosuur sistien in verskillende organe van die liggaam soos die niere, lewer, milt, skildklier, spier, oë, brein en pancreas. Verskillende organe word op verskillende ouderdom aangetas. W at is sistien? Sistien is n aminosuur. Aminosure is organiese stowwe wat, wanneer met mekaar verbind is proteïene vorm wat noodsaaklik is vir lewe. Proteïene moet gemetaboliseer word of in spesiale strukture binne die liggaam selle, wat lisosome genoem is, afgebreek word. Die verskillende aminosure wat tot gevolg is, moet uit die lisosome vervoer word want dit kan weer gebruik word deur die liggaam. W at veroorsaak cystinose? Cystinose kom voor wanneer die vervoer stelsel versuim om sistien te vervoer, dus hoop dit op binne die lisosome. Die opgehoopte sistien vorm kristalle wat verhoed dat die sel normaal funksioneer. W at is die behandeling vir cystinose? Met die aanvang van die behandeling is lang periodes van hospitalisasie nodig, om die verskillende middels te balanseer. Daarna is hospital verblyf selde nodig. Toesig word verseker deur buitepasiëntbesoeke. Aanvanklik is hierdie besoeke 1 of 2 maande en dan 3 tot 4 keer 'n jaar. Kinders kan 'n normale lewe lei, met die nadeel van medisyne wat 'n paar keer 'n dag geneem moet word. Baie Belangrik Gereelde en stiptelike medikasie is van kardinale belang. Ouers moet asseblief daarop let dat die kind se hospitaal en doktersapfrake, so ver moontlik, nagekom word. Doen navraag wanneer jy onseker is van die medikasie. Stel alarms om te help met die medikasie roetiene. Brumilda en Danielle by Groote Schuur Hospital. Hulle kuier en geniet n koffie terwyl Brumilda wag vir haar dokters afpraak om 1 uur.
2 Cystinosis Support Group South Africa Page 10 Support Group Working Committees By Judy Kerrich-Walker (Coordinator) I t is with great excitement that we can inform you that a working committee, consisting of 8 ladies, has been formed to help the Cystinosis Support Group. The thought behind this is for the Working Committee to do the administration, fund raising and practical work that is needed for the Support Group, thus freeing our Chairperson, Gail Daniels to help the families themselves; encouraging compliance through education and the raising of awareness of cystinosis in South Africa. We may not know TOO much about Cystinosis, but we do know how to cook and freeze meals for our Moms when they are at the bedside of their children in hospital, we do know how to get together a goodie bag for our children to help pass the time while they wait to see the doctor, and most importantly we do know how to pray for the Lord s strength and encouragement to be with our 17 families. Special draw-string backpack bags were made by the working committee for our children in hospital. Our first project was to help with the organisation of the Cystinosis High Tea that was held on the 20 th October in order to raise funds for our Christmas Party to be held on the 8 th December and yes you have guessed right we are presently helping with the organisation of that Christmas party!! It is exciting to see how the Lord has brought together different ladies, with different abilities, to hopefully be a help to others. We pray that the Lord will use our endeavours to bring about His purposes. Above: Some of the ladies from the Working Committee with the Activity bags Left: Gabbie and Lee-Irwin enjoying their goodies in the activity bags.
3 Cystinosis Support Group South Africa Page 11 High Tea Fund Raiser By Lynn Reebein G reat fun and fellowship was enjoyed by all the 75 folks who joined in the fund raiser high tea held at the home of Lynn Reebein on Saturday 20 th October. Friends and family of the Cystinosis Support Group booked their one hour slots to come and enjoy tea and cake to raise funds for our children's Christmas party. A dvd of last year's Christmas party was viewed by each group, followed by a q and a time when Gail Daniels was able to give valuable information on Cystinosis to our guests in an informal way. Greeting cards and Christmas table runners were on sale to add to the funds raised and all our guests were tremendously supportive in purchasing these items. Several men were seen amongst the guests as well as a few children who brightened up the occasion. Some guests actually had such a good time that they visited twice during the day, bringing different parties of guests each time! Sufficient funds were was raised to give our children and their families a great time on 8 th December when they can meet each other and be pampered for a day as we share the love of Christ with them. Right. Liz Lombard Volunteered to be our Washer Upper for the day.
4 Cystinosis Support Group South Africa Page 12 More Pictures... Danielle and Tarryn, visiting with Kathleen Sandra, sister at St. Joseph s home for chronically sick children. She s also foster Mom to Jaydon one of the cystinosis patients. Here with Priscilla age 11 years with cystinosis and Dawn Skinner (Danielle s aunt), visiting from UK.
5 Cystinosis Support Group South Africa Page 13 Above: a toiletry pack prepared by the working committee for Mom s when they stay at hospital with their child. Above right: Gail and Staff nurse Faro at Tygerberg Hospital. Unitha, Francois, Gail, Corne and Francois enjoying the High Tea. Francois and his friends adopted a cystinosis family. Full story of their partnership will follow in next issue. Lydia, receiving food hamper for their family who is fostering Stephan. Sibulele, Jaydon, Beyonce with head down and Torique saying good bye to Dr. Jen from red Cross children s Hospital who will be studying in the USA for two years. Also some Moms wishing Dr. Jen well for her studies.
6 Cystinosis is a metabolic disease which affects multiple organs. Can you find the names of the organs listed in this box of letters below? They may read horizontally, vertically or diagonally, either forwards or backwards, but always in straight lines. Use a ruler to cross them through as you find them. n s a p r r a y e d e t a c n d k n e n p n e i i l n e c s c o d a e a y r e r n b e l e s e y e r l i c l d h y a p v p s a t s i s e l a u o e n a r e e m m c Kidneys liver spleen Brain thyroid muscle eyes pancreas
7 Meet Kwakhe Msibi M y name is Constance Msibi. I stay in Daveyton Gauteng. The name of my son is Kwakhe. He is 16yrs of age. He was diagnosed with cystinosis at the age of 3yrs. He s now on dialysis. He has not been getting cysteamine for the past 3yrs due to the government not having funds. I met a lady doctor at Far East Rand hospital while he was sick. She s running a foundation called Remove The Blues Foundation. She has done so much for us including supporting us financially and emotionally. Her name is Dr Claire Prior and she is currently trying to get cysteamine for Kwakhe. The foundation has been of great help to us all. Right. Kwakhe at Hope School for disabled learners with chronic diseases. Kwakhe is a very positive boy in general and wants to become a doctor who specialises in kidneys one day. He said he wants to give hope to children with cystinosis. He is also in the process of inventing a computer game. Below: Kwakhe, left with his friends at school Below: Mom, Connie and Kwakhe and below right: Kwakhe with his sisters; 14 year old, Sizakele and 8 year old Khanyi.
8 Cystinosis Support Group South Africa P.O. Box 669 Cape Gate 7562 Cape Town Tel Cell: Bank Details: Cystinosis Support Group South Africa ABSA Bank Savings Account: Branch Code: Committee: Chairperson: Gail Daniels Secretary: Michele Roux Assistant Secretary: Louise Alexander Treasurer: Colin Daniels Assistant treasurer: Tarryn Evans Events Co-ordinator: Salome Pretorius Working Committee Co-ordinator Judy Kerrich-Walker Medical Advisor: Dr. Peter Nourse The Cystinosis Support Group South Africa is registered as an All Volunteer, Non Profit Organisation Thank You... Baie Dankie... Enkosi... Ons hartlike dank aan elkeen vir jul ondesteuning, bystand en bemoediging die afgelope jaar. Ons erken dat hierdie paadjie baie moeiliker sou gewees het sonder jul bydrae op soveel maniere. We also express our heartfelt thanks for each family and individual for your very generous contribution towards our Christmas party. Each contribution is valued and received with much gratitude. We are ever grateful to Marjolein and Jan, from the Netherlands Support Group, for their financial contribution towards our work in South Africa. We continue to seek local funding and encourage you to partner with us in this outreach. Ruth 1:8... May the Lord reward you for your kindness... Our affiliations:
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