International Federation Of Marfan Syndrome Organizations
Volume 4, Number 2, (July/August, 2009)

Contents:
News from the Marfan Association UK
Upcoming EMSN Annual Meeting
Landsforeningen for Marfan Syndrome - meeting
Big News from Spain
More News from the United States
NMF Chapter news - Physician Awareness
Hello from Japan
South Africa "Connects"

Priscilla Ciccariello, President IFMSO

Now, as we move into the 17th year of the International Federation of the Marfan Syndrome Organization's existence - referred to informally as the IFMSO - we are overwhelmed with the accomplishments of all the work that has been accomplished throughout the world by each IFMSO organization.. More importantly, as the different organizations grow, communication and sharing of research and treatment news has increased.

The Marfan news from all of the worldwide Marfan organizations is truly impressive. This issue of the IFMSO E-Newsletter - besides providing news from IFMSO member organizations features a report from Robin and Diane Rust, who are the founding Directors of the Marfan Association UK. They have worked tirelessly to accomplish their many activities and projects over the years on behalf of research and support services for people affected with the Marfan syndrome throughout the United Kingdom. Their newsletter is always full of impressive activities and accomplishments in the field of research and support services. A big "thank you" to them both for their recent update in the IFMSO E-Newsletter and to the many folks in the organization who have played a part in support of their work.

NEWS From the United Kingdom

FROM THE MARFAN ASSOCIATION UK

We have had huge involvement in the last couple of years in projects concerning the Heart and it has been very encouraging to see Marfan syndrome included in the final launches - often held at Parliament.

We have also been monitoring the musculoskeletal aspects of Marfan syndrome and the facilities that currently exist for patients. Now Robin and I are pleased to be included in an Audit of implementation of the Department of Health's Musculoskeletal Services Framework.
Currently we are working together with an Eye Hospital on the inclusion of a pamphlet for children with Marfan syndrome.

Our Marfan Information Day, held in London earlier this year, was well attended and Feedback has been very positive. Patients have stated that they were pleased to meet in a clinical environment that also managed to be friendly and informal. It is always thrilling to meet up with our Members who are, of course, the reason for our vital work.

Robin and I have quite a few planned meetings to discuss "new ideas" that will, hopefully, improve the care and quality of life for everyone who is directly and indirectly affected by Marfan syndrome.

We are encouraged to hear of headway being made by you all across the world!!

TOGETHER WE CERTAINLY CAN!!

Robin and Diane Rust
www.marfan-association.org.uk

News from the European Marfan Support Network (EMSN)

We received news and an invitation to attend the EMSN annual conference from Beatrice Preston, the coordinator of the EMSN. This year the EMSN will be held in Bergen, Norway.

The European Marfan Support Network (EMSN) (and related disorders), in conjunction with the EMSN Young Adults will hold their annual meeting for 2009 on August 27-30, 2009, in Bergen, Norway. The meeting is hosted by the Norway Marfanforeningen. For information contact Beatrice Preston, at her e-mail, prestons@bluewin.ch.

More News from Norway

We recently received this news from Bodil Davidsen (Sekretariatsleder / socialrådgiver) from their newsletter (sent on the web) - Looks like a good program, and still time to sign up - .. www.marfan.no
MS Landsforeningen for Marfan Syndrome
Indbydelse Maj 2009

OPLEV EN WEEKEND MED ETTA CAMERON

23-25. oktober 2009 i Odense.
I 2007 havde Landsforeningen for Marfan Syndrom den glæde at synge med Etta Cameron, Landsforeningens protektor, i en hel weekend. Denne weekend var en meget stor succes, og Etta har endnu engang stillet sig vederlagsfrit til rådighed. Vi har derfor den store glæde igen at kunne invitere til en weekend med Etta Cameron. Vi skal synge sammen med Etta en del af weekenden og afslutte med en gospelkoncert søndag eftermiddag, hvor vi deltager som kor til nogle af sangene.
Workshoppen finder sted på Dalum landbrugsskole, Landbrugsvej 65, 5260 Odense S. www.dalumls.dk. Koncerten finder sted søndag d. 25. oktober kl. 16 i Fraugde Kirke, 5220 Odense SØ. Overskuddet fra arrangementet tilfalder Landsforeningens rådgivningsarbejde.

Program:
Fredag 23 oktober
Kl. 16.30 - 17.30 Ankomst
Kl. 18.00 - 19.00 Aftensmad
Kl. 19.30 - 22.00 Workshop med Etta Cameron
Kl. 22.00- Aftenkaffe
Lørdag 24.oktober
Kl. 8.30 - 9.30 Morgenmad
Kl. 9.30 - 12.00 På egen hånd i Odense.
Kl. 12.00 - 13.00 Middagsmad
Kl. 13.15 - 17.00 Workshop med Etta Cameron med pauser og kaffe
Kl. 18.00 - 19.30 Aftensmad
Kl. 19.30 - 22.00 Workshop med Etta Cameron
Kl. 22.00 - Ost og rødvin
Søndag 25.oktober
Kl. 8.00 - 9.00 Morgenmad.
Kl. 9.00 - Frit samvær eller fælles aktivitet. Nøglerne afleveres senest kl. 9
Kl 12-13 Middagsmad. Herefter kørsel i egne biler eller fælles transport til
Fraugde (10 min)
Kl. 13.30 - 14.30 Korprøve. Herefter kaffepause i præstegården indtil
Kl. 16.00 koncert
Hjemrejse efter koncerten

Hvem kan deltage?
Vi har den glæde at kunne invitere medlemmer af Landsforeningen for Marfan Syndrom, andre foreninger fra Sjældne Diagnoser, Hjerteforeningens børneklub samt andre interesserede til denne spændende weekend. Alle unge fra ca. 11 år og voksne i alle aldre er velkomne. Det forventes at de yngre deltagere kan klare sig selv, da vi ikke har hjælpere med til disse, men vi håber naturligvis at forældrene også vil deltage. Det er ikke et krav, at man kan synge rent - man skal blot have lyst til at syngeJ

Tilmelding og betaling.
Tilmelding sendes til Bodil Davidsen, Tamsborgvej 1 2 th, 3400 Hillerød eller marfan@marfan.dk senest 30 august. Det er muligt at sende tilmeldingen pr. e-mail under forudsætning af at alle spørgsmål besvares. Der er plads til ca. 50 overnattende deltagere, så "først til mølle"
Indbetaling finder sted senest 30. august til Mogens Buhelt, girokonto 884-0962 (reg 1551) eller Danske Bank, Brønshøj afd. reg. 3186 konto 4707 80 93 53 med tydelig angivelse af navn

Mange hilsener og på gensyn
Bodil Davidsen
Sekretariatsleder / socialrådgiver
-------------------------------------------------------------------------------
News from Spain

In a June e-mail from Nicolas Beltran, he writes from the Asociacion de Afectados Sindrome de Marfan in Spain with great news:

"Dear Priscilla SIMA will hold next year its 10th Anniversay. For this reason we are planning the First International Congress of Marfan syndrome in Spain. We want to dedicate it to the trial "Losartan versus Antenolol, " being developed in many countries including Spain…."

As important is the news that there is a new Marfan Unit in the Vall D'hebron Hospital in Barcelona.

NUEVA UNIDAD MARFAN EN EL HOSPITAL VALL D’HEBRON DE BARCELONA
Uno de los acontecimientos más importantes para SIMA, ha sido la creación de
la Unidad Multidisciplinar para el diagnóstico tratamiento y seguimiento de personas
afectadas por el Síndrome de Marfan del Hospital Vall d'Hebron de Barcelona.
El teléfono para la solicitud de cita es el +34 932 746 244
La unidad multidisciplinar está liderada por el doctor Artur Evangelista (cardiólogo)
y por un importante número de profesionales expertos en el manejo del Marfan.
Está dotada de:
.. Intranet como única plataforma vehicular para los diferentes especialistas
de la Unidad.
.. Servicio de consulta telefónica
.. Todo lo necesario para el desarrollo de Investigación Básica que facilite
el mejor manejo terapéutico de la enfermedad.
Su estructura es la siguiente:
.. Coordinador. Dr. Arturo Evangelista
.. Cardiología: Dr. Evangelista, Dra. Texidó.
.. Cardiología pediátrica: Dra. Albert
.. Cirugía Cardíaca: Dr. Igual/Dr. Rodríguez
.. Enfermería: F. Huguet
.. Genética: Dr. Del Campo / Dra. Seidal
.. Oftalmología: Dra. Galán
.. Técnicas de Imagen: Dr. Rodríguez-Palomares
.. Obstetricia/Ginecología: Dra. Goya
.. Traumatología: Dr. Vagó / Dr. Villanueva
.. Rehabilitación: Dra. Meléndez.
Esta unidad actúa en estrecha colaboración con la recientemente creada SIMA Cataluña.
En la foto parte del equipo médico de la unidad con nuestros compañeros de SIMA
Catalunya.

Nueva Unidad Marfan en el Hospital Vall D'HEbron De Barcelona

News from the United States

World Renowned Mayo Clinic to Host National Marfan Foundation's 25th Annual Conference, August 6-9, 2009

The National Marfan Foundation is bringing its 25th Annual Conference to Mayo Clinic, one of the world's leading medical institutions, on August 6-9, 2009. Mayo Clinic, in Rochester, Minnesota, a leader in the care of patients with Marfan syndrome and related disorders, has treated more than 600 patients with Marfan syndrome since 1986.

Mayo's Marfan Clinic, which was established in 2002, is co-directed by NMF Professional Advisory Board member Heidi Connolly, MD, a cardiologist, and Thoralf Sundt, MD, a cardiovascular surgeon. The clinic provides education to patients on a range of issues exercise, endocarditis prophylaxis (preventing an infection in the lining around the heart), pregnancy, genetic implications and lifelong management.

The NMF invites the Marfan and related disorder community from all over the world to this silver anniversary conference. The NMF Annual Conference is a place where you or your children will quickly feel at home. You can make personal connections with people who are going through the same medical journey that you are or have already been through it and can share their experience with you. You can easily begin conversations about matters that can improve your life, rather than first needing to explain things to people who just don't get it.

You will also benefit from medical updates from the country's foremost medical experts on Marfan syndrome and related disorders - the doctors who are doing the research and heading the leading Marfan clinics in the United States. They are available to you throughout the two days of the conference - sit in on their small-group workshops or strike up a conversation with them during a break. There are more than 60 medical and psychosocial workshops to choose from. There are special programs for children and teens, as well as customized workshops for young adults and unaffected spouses/partners.

Said one recent attendee: It is not even a slight exaggeration to say that the conference experience has completely altered how I feel and think about myself as a person affected by Marfan syndrome. My outlook is so much more positive, realistic and accepting.

For more information or to register, log on to the NMF's website, www.MARFAN.org, and click on Conference and Events. Or, call the NMF at 800-8-MARFAN.

# # #

Losartan vs. Atenolol Clinical Trial Enrolls 400th Participant; 204 More Patients Needed for this Critical Research

The NMF is pleased to announce that, as of May 2009, there are 400 people enrolled in the losartan vs. atenolol clinical trial, which is comparing the effect of the two medications on the aorta of people (age six months to 25 years) with Marfan syndrome. This is about two-thirds of the way to the required 604 patients needed for the study.

Upon reaching the 400 patient mark, the NMF received this email from the National Heart, Blood, and Lung Institute, which is funding the trial.

As we celebrate the recruitment of 400 patients (the two-thirds mark!), we hope that this milestone inspires additional people to step forward and participate so that we can reach our recruitment goal of 604.

We never lose sight of the fact that every recruitment milestone represents a commitment and an act of faith on the part of children, teens, young adults and their families who are enrolled. We are inspired every day by the stories of the families and children who have entered the Marfan trial. We thank all of you for your courage and community spirit in participating in this landmark trial. You are truly motivating to all of us who work in clinical research, working to advance knowledge of Marfan syndrome and other heart-related conditions. Thank you.

Gail Pearson MD, ScD, and Victoria Pemberton, RNC, MS, CCRC
Pediatric Heart Network, NHLBI, NIH

There is still time to enroll in the study. Please enroll now. For information on criteria for patients and how to get involved, log on to www.marfan.org.

# # #

Screening of a New Marfan Syndrome Documentary: "In My Hands."

In My Hands, a new documentary by Sister Productions, was screened for the first time at the NBC Universal Screening Room in New York City on May 27. The film -- created by Tony Award winner Ann Reinking; Brenda Siemer Scheider who is Roy Scheider's award-winning wife; and Emma Joan Morris -- is a moving, heartwarming account of learning to live with Marfan syndrome, a potentially life-threatening disorder of connective tissue. New York City Mayor Michael Bloomberg was on hand to introduce the film to a packed room of VIPs and friends.
The documentary, which features several individuals and families who have faced medical and psychosocial challenges with Marfan syndrome, was shot partially at the National Marfan Foundation's (NMF) 2007 annual conference at Stanford University.

Reinking, with her unique talent as an accomplished dancer and choreographer, is seen in the film transforming the body image and self-esteem of a group of children, from elementary school age to teens, as she teaches them how to move their body and dance. She is able to bring their inner beauty to the forefront, giving the teens a new self-image and newfound confidence. Reinking's son, Chris, is affected with the condition and is among those featured in the film. Now a teenager, he was diagnosed at the age of two years old.

Dance sequences are interwoven with the heart-wrenching account of several people with Marfan syndrome, including members of the Ciccariello family. Priscilla Ciccariello, a former librarian and the chair emeritus of the NMF, lost her husband, the oldest of her seven sons and a grandson to Marfan syndrome. Two of her remaining sons and two of her granddaughters have the condition. Her youngest son, John, and his daughter, Danica, are among those featured in the documentary.

"In My Hands" is a compelling story of transformation of people with Marfan syndrome and of Ann, as she watches her son grow with the condition," said Carolyn Levering, President and CEO of the National Marfan Foundation. "We are so thrilled that Ann, Brenda and Emma were able to take their vision and create this powerful documentary. It has a message of hope that goes beyond the Marfan community. It will open the eyes of anyone with a chronic illness to see that there are choices in how we deal with the cards that are dealt to us and there are tools that can help us see the beauty and potential in ourselves."
The documentary producers are currently seeking distribution or broadcast opportunities. Inquiries may be directed to Jonathan Martin, NMF Director of Education and Awareness, jmartin@marfan.org.

Pictured at the NMF Gala, left to right: Dr. Hal Dietz; Emma Morris; Mayor Michael Bloomberg; Ann Reinking; producer, Brenda Siemer Schneider, NMF Director Carolyn Levering; Karen Murray.
_________________________________________________________________________

And more news from the NMF Massachusetts' Chapter
- Physician Awareness Committee - outreach program

The Physician Awareness Committee of the Massachusetts' Chapter of the NMF has been working for a several years as a liaison with the hospitals in the Boston area. This has been a very effective way of raising awareness of MFS among the doctors and nurses in the hospitals - especially in the emergency rooms which are the first "port of entry" for patients with cardiovascular incidences. Recognition of the MFS dissections is critical for successful and timely responses. Below are the most recent activities of the Chapter.

Massachusetts Chapter of the National Marfan Foundation
- Physician Awareness Committee

We are pleased to announce that Dr. Ronald Lacro, Dr. Michael Singh, Dr. Michael Murray and Martha C. King, RN, are working with the Massachusetts Chapter of the National Marfan Foundation to raise awareness about Marfan syndrome and elevate the level of patient care for affected people in our local area hospitals.

Dr. Lacro is the Director of the Marfan Syndrome Program at Children's Hospital Boston; Dr. Singh is the Co-Director of the Marfan Syndrome Program at Children's Hospital Boston and the Co-Director of the BWH Comprehensive Marfan Clinic at Brigham and Women's Hospital; Dr. Murray is the Co-Director of the BWH Comprehensive Marfan Clinic; and Ms. King is the Clinical Coordinator for the Marfan Syndrome Clinic at Children's Hospital Boston.

Through this collaboration, we plan to provide area health professionals with the most current information on Marfan syndrome through customized presentations for various specialists. Presentations focus on early detection of Marfan syndrome and effective management and monitoring of the condition. Because these patients are at increased risk for aortic dissection, emphasis is also placed on preventing a potentially fatal episode, and how to evaluate and treat one if it does occur.Drs. Lacro, Singh and Murray, along with Ms. King, are available to present to a range of audiences-from division or departmental conferences to Grand Rounds. We can offer comprehensive or multidisciplinary talks of general interest to primary care providers, including pediatricians, and tailored presentations for disciplines including cardiology, cardiac surgery, emergency medicine, orthopedics, ophthalmology, genetics or obstetrics. We can also arrange meetings tailored to attending physicians, trainees, medical students, nurses and other health care professionals.

Supplementing the presentation, we can offer a two-hour AMA accredited video, Emergency Diagnosis and Treatment of Aortic Dissection, produced by the National Marfan Foundation. Marfan patients are also available to offer the patient perspective and to answer questions based on their experience living with the disorder.

We hope you are interested in taking advantage of this opportunity to better treat Marfan patients. Please let us know whom we may contact at your institution to arrange a presentation. We are happy to work with your Continuing Education Department or other staff members to accommodate your specific needs.

For more information or to arrange a presentation, please contact Jonathan Rodis or Stephen Griffin, co-chairs of the Physician Awareness Committee, or Martha C. King, RN. Their contact information is below.

Thank you for your consideration.

Most sincerely,

The Massachusetts Chapter of the NMF
Physician Awareness Committee
__________________________________________________________________________

News from Japan

Yoko Shimozaki, from the Marfan Network Japan (NMJ), sent a lovely picture of members of the organization and a welcome "hello." Yoko has worked tirelessly to share information and to build a strong support group in Japan, with much support for research on MFS.

Dear Priscilla
Thank you for your quick reply.
Here I send you a picture.
I had received an information for NMF meeting in Minnesota. I wish
I could come, especially, because Minnesota is the place where I spent one
year 35 years ago and have many nice memories. But I don't think I can
this year unfortunately.
I wish you a successful meeting next month.

Yoko Shimozaki

[
Pictured are Members of the Marfan Network Japan (MNJ) gathered at a meeting. ________________________________________________________________________

More News from South Africa

Dear Priscilla,
I hope that you are keeping well now that your weather must be warmer. We are having a cold winter - heavy frost most mornings, although by midday it is pleasant in the sun, if there isn't any wind. (Rain and snow are very rare this area - the central plateau, called the highveld. Cape Town has been having lots of rain and flooding and there has been snow on all the South African mountains, with roads often impassable.]

Kindest regards
Lorna Higgs
SAMSO Information
South African Marfan Syndrome Organisation

See excerpts from Lorna's newsletter, below - written in both English and Afrikaans -
Connections/Bindings - Vol.10 No.4

Incorrect Diagnosis/Verkeerde Diagnose
Recently we have discovered that some SAMSO members who were told by their doctors or specialists that they had Marfan syndrome, actually have other disorders. Very few, if any, South African doctors know the correct way to diagnose our disorder and guess that the patient has it if they are fairly tall and have a heart murmur, or joint problems, or eye problems or lung problems (asthma or bronchitis - not Marfan symptoms!).
Marfan syndrome can only be confirmed if:
· The patient has major criterion symptoms in at least two organ systems and at least three organ systems are affected altogether.
OR
· The patient has a first degree relative with Marfan syndrome and at least one organ system with a major criterion symptom and at least two organ systems are affected altogether.
Organ systems that can be affected in Marfan syndrome: Heart/aorta, eyes, bones/joints, lungs, skin, spinal cord (see Marfan Syndrome Handbook).

Contact SAMSO if you have less than three organ systems affected or if you have less than two organ systems affected, as well as a close relative with Marfan syndrome. We can try to help you to get a confirmed diagnosis of the disorder, or possibly help you to get a correct diagnosis of some other disorder.
N.B. It is better to assume that you have Marfan syndrome when there is doubt, than to think, incorrectly, that you do not have it. Regular heart/aorta and eye tests are completely harmless and they could save lives and eyesight - in Marfan syndrome and some other disorders.

Ons het onlangs uitgevind dat sommige SAMSO lede, wat deur hul dokters of spesialiste met Marfansindroom gediagnoseer is, eintlik ander afwykings het. Baie min, as enige, Suid-Afrikaanse dokters ken die regte metode om ons afwyking te diagnoseer en hulle raai dat die pasiënt dit het as hulle taamlik lank is en het 'n hartgeruis of oog probleme of gewrig-probleme of long-probleme (asma of brongitis - nie Marfan-symptome nie!).
Marfansindroom kan net bevestig word as:
· Die pasiënt hoofkenmerk simptome in minstens twee orgaanstelsels het en minstens drie orgaanstelsels altesame affekteer is.
OF
· Die pasiënt het 'n eerste-graadse familie-lid met Marfansindroom en minstens een orgaanstelsel met 'n hoofkenmerk simptoom en waar minstens twee orgaanstelsels altesame affekteer is.
Orgaanstelsels wat in Marfasindroom geaffekteer kan wees: Hart/aorta, oë, bene/gewrigte, longe, vel, rugmurg (sien Marfansindroom Handboek).

Kontak SAMSO as u minder as drie orgaanstels het wat geaffekteer word of as u minder as twee orgaanstels wat affekteer word, tesame met 'n naaste bloedverwant met Marfansindroom. Ons kan probeer om u te help om 'n bevestigde diagnosering van Marfansindroom te kry, of miskien 'n diagnose van 'n ander afwyking.
LW. Dit is beter om aan te neem dat u Marfansindroom het wanneer daar twyfel is, as om te dink, verkeerdelik, dat u dit nie het nie. Gereelde hart/aorta- en oog-toetse is heeltemal skadeloos en hulle kan lewens en sig red - in Marfansindroom en sommige ander afwykings.

Marfan Matters/Marfan Mededelings

Teasing and Bullying in Marfan Syndrome
Because many children and teens with Marfan syndrome look different to their schoolmates, they are teased and bullied. This:
· leads to suffering;
· results in even worse self-image for the patient;
· can affect schoolwork and exam marks.
Parents of Marfan children should always look for signs that the child/teen is not happy at school and try to help him/her in the following ways:
· Discuss the problems of Marfan syndrome with understanding.
· Try to improve self-image by encouraging the child/teen to achieve in something - schoolwork, or hobbies (not sport), or voluntary service, etc.
· Ensure that the teachers and school psychologist know about Marfan syndrome.
· Ensure that teachers are aware that the child is being teased/bullied.
· Try to organise a Marfan syndrome presentation at the school for children and teachers by the child, a teacher, parent, or SAMSO so that everyone realises that the "differences" are not the fault of the child and that the child has the same value as a person as everyone else.
· Help the child to realise that those who do the teasing, only do so because they have problems of their own (psychological).

Spot en Treiter in Marfansindroom
Omdat baie kinders en tieners met Marfansindrom "anders" as hul skoolmaats lyk, word hulle gespot en getreiter. Dit:
· veroorsaak lyding;
· veroorsaak nog erger self-beeld vir die pasiënt;
· kan skoolwerk en eksamen-punte affekteer.
Ouers van Marfan-kinders moet altyd vir tekens dat die kind ongelukkig op skool is soek en hom/haar probeer help soos volg:
· Gesels oor die probleme van Marfansindroom met insig.
· Probeer om self-beeld te verbeter deur die kind/tiener aan te moedig om te presteer in iets - skoolwerk, of stokperdjies (nie sport nie), of vrywillige diens, ens.
· Maak seker dat die onderwysers en skool-sielkundige van Marfansindroom weet.
· Maak seker dat die onderwysers weet dat die kind gespot en getreiter word.
· Probeer om 'n Marfansindroom-lesing deur die kind, 'n onderwyser, 'n ouer, of SAMSO vir kinders en onderwysers by die skool te reël, sodat almal kan leer dat die "andersheid" nie die skuld van die kind is nie en hy/sy dieselfde werd as enige ander persoon het.
· Help die kind om te besef dat dié wat spot, doen dit net omdat hulle self probleme (sielkundig) het.

Marfan Awareness/Bewustheid
A SAMSO media release has gone out to more than 180 newspapers, radio stations and magazines throughout South Africa. If your newspaper uses the information, please let SAMSO know. We are hoping that more people in the country learn about our disorder - and possibly

even find out that they have it.

'n SAMSO media-vrystelling is aan meer as 180 koerante, radiostasies en tydskrifte dwarsdeur Suid-Afrika gestuur. As jou koerant die inligting gebruik, laat SAMSO asseblief weet. Ons hoop dat meer mense in die land van ons afwyking leer - en miskien selfs uitvind dat hulle dit het.

New SAMSO Booklet/Nuwe SAMSO Brosjure
SAM/017a - Children and Teens
SAM/017b - Kinders en Tieners
.

Marfan Syndrome Information/Marfansindroom Inligting
Remember to look in The Marfan Syndrome Handbook (SAM/090a) if you:
have any questions about any aspect of the disorder.
· want to know if treatment recommended by your doctor is the correct one for Marfan syndrome.
· wonder if some new symptom, or one in some organ system, other than the heart/aorta and eyes (that most patients know about), is Marfan related.

Members can contact SAMSO by mail, e-mail, fax or telephone (see front cover for details) if they need any information about Marfan syndrome symptoms and treatment. Read that section of the Handbook or SAMSO leaflets first to get all the basic information.

Onthou om in Die Marfansindroom Handboek (SAM/090b) te soek as u:
enige vrae het oor enige aspek van die afwyking.
· wil weet of behandeling wat deur u dokter aanbeveel is, die regte een vir Marfansindroom is.
· wonder of 'n nuwe simptoom, of een in 'n ander orgaanstelsel as die hart/aorta of oë (waarvan meeste pasiënte weet), Marfan-verwante is.
Lede kan SAMSO kontak per pos, e-pos, faks of telfoon (sien voorblad vir besonderhede) as hulle enige inligting oor Marfansindroom simptome of behandeling nodig het. Lees eers daardie afdeling van die Handboek of SAMSO brojures om die basiese inligting te kry. (Sien die katalogus op bladsy 5.)

Regards/Groete

Lorna Higgs

Please send in your news and pictures for our next issue, Priscilla Ciccariello, cilla71@aol.com