Welcome to my PGP/SPD blog: Links and Info:



SPD is Symphysis Pubis Dysfunction.


PGP is it's appropriate name: Pelvic Girdle Pain. (although I disagree as many do and feel this name is too general.)


I have created this blog about my story to raise more awareness in regards to PGP and SPD with links to the appropriate support sites to make your recovery as easy as possible.


The main websites I have found for you to look at now are:


The ACPWH have changed their website and here are the new links to access the 2 SPD documents you need to read which will offer you help when you have been diagnosed with SPD:

http://acpwh.csp.org.uk/publications

http://acpwh.csp.org.uk/publications/pregnancy-related-pelvic-girdle-pain


http://www.pelvicpartnership.org.uk/

(This is a charity support group here to help you as a sufferer.)


http://www.facebook.com/group.php?gid=137142035812&ref=mf

(Our own official support Group on Facebook JOIN US, RECEIVE HELP, INSPIRE OTHERS)



More websites you may find helpful:


NEW CHARITY: SUPPORT PELVIC DYSFUNCTION: http://www.supportpelvicdysfunction.co.uk Donate online, receive help and support one on one and read helpful the helpful guides provided to help you cope with SPD and other pregnancy related complications.


Study by Royal College of Midwives-Evidence-Based Midwifery, Sept, 2007 by Vanda K. Wellock, Margaret A. Crichton


http://findarticles.com/p/articles/mi_6862/is_2_5/ai_n28445225/


Link about DSP and SPD/breastfeeding.


http://www.plus-size-pregnancy.org/pubicpain.htm#Should%20I%20stop%20breastfeeding%20if%20I%20am%20still%20experiencing%20pubic%20pain%20postpartum


More info on SPD and a link to a support forum to talk to others about SPD.


http://www.madmums.com/GH_ShowArticle~HID~147.htm


Community Legal Aid: (If you need legal advice in any situation)

0845 345 4 345.



Another suggested link that my be helpful: (Scotland)

http://www.pelvicinstability.org.uk/index.asp


Additional links which are useful (Thanks to a lady from babycentre and all the other contributors! You know who you are and you have been fantastic!)


http://www.nice.org.uk/nicemedia/pdf/CG62FullGuidelineCorrectedJune2008.pdf and http://onlinetog.org/cgi/reprint/8/3/153.pdf


SPOON THEORY:


But You don't look sick?

Copyright: 2003 by Christine Miserandino butyoudontlooksick.com

A story that helps the disabled not just SPD sufferers:

http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf



It is important to NOTE that PGP formerly SPD is not just caused during pregnancy (1 in 4 women) and that many sportsmen and women also suffer from PGP / SPD.


Hope you find this information helpful and pass it on and invite others, as severe cases are defined as a disability and can be made permanent condition(s) if not treated correctly.


Awareness:


Due to lack of awareness that this site exists, MANY women are sat at home now, MANY pregnant and suffering unknowingly with SPD and/or joint conditions. As a founder of a start up charity I cannot advertise. I am merely asking you as a reader of this blog and supporter of the new SPD charity, Support Pelvic Dysfunction, to share this site with others, maybe friends on your facebook? twitter? Anywhere, by doing so YOU WILL be HELPING many more SPD sufferers like YOU and those that are suffering in silence right now not knowing we are here to help. We need YOU to help us, to help them. :)


We would like to put out a huge THANK YOU to all those women on our support groups and pages, on facebook, who are all discussing SPD and helping one another, and to thank ALL those who are sharing this blog and the charity website Support Pelvic Dysfunction.


Because of you, Support Pelvic Dysfunction receives many emails from helpless women desperate to know if they will re-cover and emails from those that have unknown underlying joint conditions, to which we can assist to get them a REAL diagnosis and help!


Dont suffer in silence!

Email: help@supportpelvicdysfunction.co.uk


(This blog is not affiliated with the charity, however as the founder of the charity, this is my personal REAL, TRUE TO LIFE story, that i have put in place to help others!)



Please enjoy my personal story in the form of a blog below.

Sunday, 21 March 2010

What is EDS? (My disability)

Reference from: http://ghr.nlm.nih.gov/condition=ehlersdanlossyndrome

Please note: Some links may have been disabled as it is a quoted extract which copyrights all belong to the reference link above and at the bottom, all rights reserved to original copyright proprietor.



"Reviewed May 2006

What is Ehlers-Danlos syndrome?

Ehlers-Danlos syndrome is a group of disorders that affect connective tissues,
which are tissues that support the skin, bones, blood vessels, and other organs.
Defects in connective tissues cause the signs and symptoms of Ehlers-Danlos syndrome,
which vary from mildly loose joints to life-threatening complications.

In the past, there were more than 10 recognized types of Ehlers-Danlos syndrome.
In 1997, researchers proposed a simpler classification that reduced the number of major types to six and
gave them descriptive names: the arthrochalasia type, the classic type, the dermatosparaxis type,
the hypermobility type, the kyphoscoliosis type, and the vascular type.
Other forms of the condition may exist, but they have been reported only in single families or are not well characterized.

Although all types of Ehlers-Danlos syndrome affect the joints and many also affect the skin, features vary by type.
An unusually large range of joint movement (hypermobility) occurs with most forms of Ehlers-Danlos syndrome,
particularly the hypermobility type. Infants with hypermobile joints often appear to have weak muscle tone, which can
delay the development of motor skills such as sitting, standing, and walking. The loose joints are unstable and prone
to dislocation, chronic pain, and early-onset arthritis. Dislocations involving both hips are a characteristic finding in
infants with the arthrochalasia type of Ehlers-Danlos syndrome.

Many people with Ehlers-Danlos syndrome have soft, velvety skin that is highly elastic (stretchy) and fragile.
Affected individuals tend to bruise easily, and some types of the condition also cause abnormal scarring.
People with the classic form of Ehlers-Danlos syndrome experience wounds that split open with
little bleeding and leave scars that widen over time to create characteristic shallow "cigarette paper" scars.

The dermatosparaxis type of the disorder is characterized by skin that sags and wrinkles.
Extra (redundant) folds of skin may be present as affected children get older.
Some forms of Ehlers-Danlos syndrome, notably the vascular and kyphoscoliosis types, can involve
serious and potentially life-threatening complications. Blood vessels can tear (rupture) unpredictably,
causing internal bleeding, stroke, and shock. The vascular type of Ehlers-Danlos syndrome is also associated
with an increased risk of organ rupture, including tearing of the intestine and rupture of the uterus (womb)
during pregnancy. People with the kyphoscoliosis form of Ehlers-Danlos syndrome experience severe,
progressive curvature of the spine that can interfere with breathing.

How common is Ehlers-Danlos syndrome?

Although it is difficult to estimate the overall frequency of Ehlers-Danlos syndrome, t
he combined prevalence of all types of this condition may be about 1 in 5,000 individuals worldwide.
The hypermobility and classic forms are most common; the hypermobility type may affect as many as
1 in 10,000 to 15,000 people, while the classic type probably occurs in 1 in 20,000 to 40,000 people.

Other forms of Ehlers-Danlos syndrome are very rare. About 30 cases of the arthrochalasia type
and fewer than 60 cases of the kyphoscoliosis type have been reported worldwide. About a dozen
infants and children with the dermatosparaxis type have been described.
The vascular type is also rare; estimates vary widely, but the condition may affect about 1 in 250,000 people.

What genes are related to Ehlers-Danlos syndrome?

Mutations in the ADAMTS2COL1A1COL1A2COL3A1COL5A1
COL5A2PLOD1, and TNXBgenes cause Ehlers-Danlos syndrome.

Some of these genes (COL1A1, COL1A2, COL3A1, COL5A1, and COL5A2) provide
instructions for making proteins that are used to assemble different types of collagen.

Collagens are molecules that give structure and strength to connective tissues throughout the body.
Other genes (ADAMTS2, PLOD1, and TNXB) provide instructions for making proteins that process or interact
with collagen. Mutations that cause the different forms of Ehlers-Danlos syndrome disrupt the structure, production,
or processing of collagen, preventing these molecules from being assembled properly. These defects weaken
connective tissues in the skin, bones, and other parts of the body, resulting in the characteristic features of this condition.
Read more about the ADAMTS2COL1A1COL1A2COL3A1COL5A1COL5A2PLOD1, and TNXBgenes.

How do people inherit Ehlers-Danlos syndrome?

The inheritance pattern of Ehlers-Danlos syndrome varies by type. The arthrochalasia, classic,
hypermobility, and vascular forms of the disorder usually have an autosomal dominant pattern of
inheritance. Autosomal dominant inheritance means that one copy of the altered gene in each cell
is sufficient to cause the disorder. In some cases, an affected person inherits the mutation from one affected
parent. Other cases result from new (sporadic) gene mutations.

These cases occur in people with no history of the disorder in their family.
The dermatosparaxis and kyphoscoliosis types of Ehlers-Danlos syndrome,
and some cases of the classic and hypermobility forms, are inherited in an autosomal recessive pattern.
In autosomal recessive inheritance, two copies of the gene in each cell are altered. Most often,
the parents of an individual with an autosomal recessive disorder are carriers of one copy of the
altered gene but do not show signs and symptoms of the disorder.

Where can I find information about treatment for Ehlers-Danlos syndrome?

These resources address the management of Ehlers-Danlos syndrome and may include treatment providers.
You might also find information on treatment of Ehlers-Danlos syndrome in 

Where can I find additional information about Ehlers-Danlos syndrome?

You may find the following resources about Ehlers-Danlos syndrome helpful. 
These materials are written for the general public.
You may also be interested in these resources, which are designed for healthcare professionals and researchers.

What other names do people use for Ehlers-Danlos syndrome?

  • EDS
  • Ehlers Danlos disease

What if I still have specific questions about Ehlers-Danlos syndrome?

Where can I find general information about genetic conditions?

The Handbook provides basic information about genetics in clear language.
These links provide additional genetics resources that may be useful.

What glossary definitions help with understanding Ehlers-Danlos syndrome?

You may find definitions for these and many other terms in the Genetics Home Reference Glossary.
References (14 links)

The resources on this site should not be used as a substitute for professional medical care or advice.
Users seeking information about a personal genetic disease, syndrome, or condition should consult
with a qualified healthcare professional. See How can I find a genetics professional in my area? in the Handbook.
Reviewed: May 2006
Published: March 14, 2010"



Reference from: http://ghr.nlm.nih.gov/condition=ehlersdanlossyndrome