Ehlers-Danlos Syndrome Results are in............................

I went to the Hospital yesterday for my test results over Hypermobility, and sadly it came back that it's positive for Type 3 Ehlers-Danlos Syndrome. This could explain why i took longer to heal, the bone to calcify and heal and why i constantly get joint pain?

Here's an explanation of it, The Dr said yesterday that Dyplasia Sufferers have Dyplasia generally because they have Ehlers-Danlos Syndrone, it misshapes the bones and causes shallow sockets.

Rheumatoid Arthritis Slideshow Pictures

Joint-Friendly Exercises Slideshow Pictures

Managing Osteoarthritis Pain: Coping with Arthritis

Medical Author: William C. Shiel Jr., MD, FACP, FACR

Medical Editor: Melissa Conrad Stöppler, MD

What is Ehlers-Danlos syndrome?

What are the types of Ehlers-Danlos syndromes?

How is Ehlers-Danlos diagnosed?

How are Ehlers-Danlos syndromes treated?

Ehlers-Danlos At A Glance

Patient Discussions: Ehlers-Danlos Syndrome

Find a local Rheumatologist in your town

What is Ehlers-Danlos syndrome?

Ehlers-Danlos syndromes are a group of disorders which share common features including easy bruising, joint hypermobility (loose joints), skin that stretches easily (skin hyperelasticity or laxity), and weakness of tissues.

The Ehlers-Danlos syndromes are inherited in the genes that are passed from parents to offspring. They are categorized according to the form of genetic transmission into different types with many features differing between patients in any given type. The fragile skin and loose joints is often a result of abnormal genes that produce abnormal proteins that confer an inherited frailty of collagen (the normal protein "glue" of our tissues).

In 2001, researchers discovered a new form of Ehlers-Danlos syndrome that is caused by an inherited abnormality in a protein other than collagen that also normally plays a role in binding together the cells of our tissues (including the skin, tendons, muscle, and blood vessels). Abnormalities in this protein, called tenascin, also lead to a form of Ehlers-Danlos syndrome. Researchers suspect that tenascin could play a role in regulating the normal distribution of collagen in the connective tissues of the body.

What are the types of Ehlers-Danlos syndromes?

Classical type

(formerly types I & II)

Marked joint hypermobility, skin hyperextensibility (laxity), and fragility are characteristic of the classic type of Ehlers-Danlos syndrome. The smooth, velvety skin is fragile and tears or bruises easily with minor trauma. Joint dislocations and scoliosis are common. Joint instability can lead to sprains and strains. This classical type is inherited as an autosomal dominant genetic trait (directly passed on from one parent to child).

Hypermobility type

(formerly type III)

Joint hypermobility is the major manifestation of this form of Ehlers-Danlos syndrome. Any joint can be affected, and dislocations are frequent. This type is also inherited as an autosomal dominant genetic trait.

Vascular type

(formerly type IV, the arterial form)

In this form of Ehlers-Danlos syndrome, spontaneous rupture of arteries and bowel is a serious manifestation that can lead to death. Clubfoot can be present at birth. Skin laxity is of varying degrees. Veins can be very visible through the skin. It is primarily inherited as an autosomal dominant (directly passed on from one parent to child) genetic trait, but recessive (not seen in family members or only in one generation of members of the same family, meaning that an individual must inherit two copies of the mutation, one from each parent) trait inheritance has been described.

Kyphoscoliosis type

(formerly type VI)

Fragile globe of the eyes, significant skin and joint laxity, and severe curvature of the spine (scoliosis) are typical features. Its inheritance pattern is autosomal recessive.

Arthrochalsia type

(formerly type VIIB, arthrochalasis multiplex congenita)

Patients are short in height and severely affected by joint laxity and dislocations. Skin involvement is variable. Both utosomal dominant and recessive inheritance is possible. A skin biopsy can be used to diagnose this disorder.

Dermatosparaxis type

(formerly type VIIC)

Patients have severely fragile skin that is soft and doughy with sagging and folding. This rare form of Ehlers-Danlos syndrome can be diagnosed with a skin biopsy.

Tenascin-X deficient type

Joint hypermobility, hyperelastic skin, and fragile tissue are seen. Patients with this type lack the multiple shrinking (atrophied) scars in the skin that are often seen in classic Ehlers-Danlos. It is inherited as an autosomal recessive genetic trait.

Other rare variant types have been reported in single families.

Ehlers-Danlos Syndrome Results are in............................

I went to the Hospital yesterday for my test results over Hypermobility, and sadly it came back that it's positive for Type 3 Ehlers-Danlos Syndrome. This could explain why i took longer to heal, the bone to calcify and heal and why i constantly get joint pain?

Here's an explanation of it, The Dr said yesterday that Dyplasia Sufferers have Dyplasia generally because they have Ehlers-Danlos Syndrone, it misshapes the bones and causes shallow sockets.

Rheumatoid Arthritis Slideshow Pictures

Joint-Friendly Exercises Slideshow Pictures

Managing Osteoarthritis Pain: Coping with Arthritis

Medical Author: William C. Shiel Jr., MD, FACP, FACR

Medical Editor: Melissa Conrad Stöppler, MD

What is Ehlers-Danlos syndrome?

What are the types of Ehlers-Danlos syndromes?

How is Ehlers-Danlos diagnosed?

How are Ehlers-Danlos syndromes treated?

Ehlers-Danlos At A Glance

Patient Discussions: Ehlers-Danlos Syndrome

Find a local Rheumatologist in your town

What is Ehlers-Danlos syndrome?

Ehlers-Danlos syndromes are a group of disorders which share common features including easy bruising, joint hypermobility (loose joints), skin that stretches easily (skin hyperelasticity or laxity), and weakness of tissues.

The Ehlers-Danlos syndromes are inherited in the genes that are passed from parents to offspring. They are categorized according to the form of genetic transmission into different types with many features differing between patients in any given type. The fragile skin and loose joints is often a result of abnormal genes that produce abnormal proteins that confer an inherited frailty of collagen (the normal protein "glue" of our tissues).

In 2001, researchers discovered a new form of Ehlers-Danlos syndrome that is caused by an inherited abnormality in a protein other than collagen that also normally plays a role in binding together the cells of our tissues (including the skin, tendons, muscle, and blood vessels). Abnormalities in this protein, called tenascin, also lead to a form of Ehlers-Danlos syndrome. Researchers suspect that tenascin could play a role in regulating the normal distribution of collagen in the connective tissues of the body.

What are the types of Ehlers-Danlos syndromes?

Classical type

(formerly types I & II)

Marked joint hypermobility, skin hyperextensibility (laxity), and fragility are characteristic of the classic type of Ehlers-Danlos syndrome. The smooth, velvety skin is fragile and tears or bruises easily with minor trauma. Joint dislocations and scoliosis are common. Joint instability can lead to sprains and strains. This classical type is inherited as an autosomal dominant genetic trait (directly passed on from one parent to child).

Hypermobility type

(formerly type III)

Joint hypermobility is the major manifestation of this form of Ehlers-Danlos syndrome. Any joint can be affected, and dislocations are frequent. This type is also inherited as an autosomal dominant genetic trait.

Vascular type

(formerly type IV, the arterial form)

In this form of Ehlers-Danlos syndrome, spontaneous rupture of arteries and bowel is a serious manifestation that can lead to death. Clubfoot can be present at birth. Skin laxity is of varying degrees. Veins can be very visible through the skin. It is primarily inherited as an autosomal dominant (directly passed on from one parent to child) genetic trait, but recessive (not seen in family members or only in one generation of members of the same family, meaning that an individual must inherit two copies of the mutation, one from each parent) trait inheritance has been described.

Kyphoscoliosis type

(formerly type VI)

Fragile globe of the eyes, significant skin and joint laxity, and severe curvature of the spine (scoliosis) are typical features. Its inheritance pattern is autosomal recessive.

Arthrochalsia type

(formerly type VIIB, arthrochalasis multiplex congenita)

Patients are short in height and severely affected by joint laxity and dislocations. Skin involvement is variable. Both utosomal dominant and recessive inheritance is possible. A skin biopsy can be used to diagnose this disorder.

Dermatosparaxis type

(formerly type VIIC)

Patients have severely fragile skin that is soft and doughy with sagging and folding. This rare form of Ehlers-Danlos syndrome can be diagnosed with a skin biopsy.

Tenascin-X deficient type

Joint hypermobility, hyperelastic skin, and fragile tissue are seen. Patients with this type lack the multiple shrinking (atrophied) scars in the skin that are often seen in classic Ehlers-Danlos. It is inherited as an autosomal recessive genetic trait.

Other rare variant types have been reported in single families.

The Journey goes on.........

Well here is a cheeky update as i haven't been online much lately. Still exercising religiously and at the same time i'm getting stronger i'm also getting weaker, and i've noticed other parts wearing not too well. Such as my Left Knee, hurts with bending, any light impact and biking too. So i'll be interested in what O'Hara has too say about that, and what he can say about the Right Hip too. Still hurts like hell doing steps, hills,stairs, walking on that side with no let up or improvement. Whereas the Left Hip hurts after a prolonged time of doing such activities but quickly recovers and it's a different sort of pain/ache all together. It actually feels like a healing ache. Although i have no idea how you girls work all day on them, even now i'm done in after some physio and light housework and have to rest the entire leg with plenty of tram and co-codamol with me. Never managed to ditch the painkillers once! The pain on the Left Side is always at the top of the thigh so i do question whether it's where i had the DVT or where the extra 2 inches came from with the Femur OST? I still can't lie down on my sides fully as the scars are still swollen areas, like extra thighs, Not flab as you might suspect but quite hard and feels like scar tissue.
I can honestly say i thought i would of been further on by now, But thats not being negative or anything just a real honest answer. I was hoping to be back at work, as i'm a freelance nail tech by trade and i have already considered this is not the trade i can do anymore due to wanting to protect the hips as much as possible. So i have considered the Tanning salons as i did Fake tanning at salons before, and i've considered perhaps going into beauty counters etc... Is it the mental aspect that holds me back? A new thought as i have just recently got back onto a bike, a real outdoor bike, not just my stationary bike at home where i'm totally safe. Now i love mountain biking and the thrill of the speed and uneven terrain, But just getting onto a bike was a HUGE mental block for me, after 2 years of not being on one, i found it immensely hard to lift my operated leg off the floor and trust in myself not too fall. It was like learning to ride all over again, shaky, scared to death, the fear is so strong i wouldn't of believed it if i hadn't felt it for myself. Now i wonder how much i have such a mental block with the leg, i chose my surgery, i looked forward too it loads, planned and prepared for it and in no way it i ever imagined this surgery would affect me mentally like it has done. So that is a consideration for newbie's that are planning surgery, just to warn you that it can happen, and how to get over it and not be afraid of feeling emotional over your surgery. I found baby steps help and confronting the issue head on, with logic and common sense helped me. But most importantly TALK to people and share your feelings.

So i'm off on Holiday in a months time, and i'm really really looking forward too it. I will be resting and recovering in the sun what could be better. And i hope that i have a new action plan for the Right Hip by then and this holiday will be needed before the whole surgery recovery cycle begins again.

I'm hopeless at asking questions when i see O'Hara, Are there any questions you would ask him if you were me? And how would you phrase them as i'm hopeless at that as well lol? Any help gratefully received guys and thank you for always being there for me xx

The Journey goes on.........

Well here is a cheeky update as i haven't been online much lately. Still exercising religiously and at the same time i'm getting stronger i'm also getting weaker, and i've noticed other parts wearing not too well. Such as my Left Knee, hurts with bending, any light impact and biking too. So i'll be interested in what O'Hara has too say about that, and what he can say about the Right Hip too. Still hurts like hell doing steps, hills,stairs, walking on that side with no let up or improvement. Whereas the Left Hip hurts after a prolonged time of doing such activities but quickly recovers and it's a different sort of pain/ache all together. It actually feels like a healing ache. Although i have no idea how you girls work all day on them, even now i'm done in after some physio and light housework and have to rest the entire leg with plenty of tram and co-codamol with me. Never managed to ditch the painkillers once! The pain on the Left Side is always at the top of the thigh so i do question whether it's where i had the DVT or where the extra 2 inches came from with the Femur OST? I still can't lie down on my sides fully as the scars are still swollen areas, like extra thighs, Not flab as you might suspect but quite hard and feels like scar tissue.
I can honestly say i thought i would of been further on by now, But thats not being negative or anything just a real honest answer. I was hoping to be back at work, as i'm a freelance nail tech by trade and i have already considered this is not the trade i can do anymore due to wanting to protect the hips as much as possible. So i have considered the Tanning salons as i did Fake tanning at salons before, and i've considered perhaps going into beauty counters etc... Is it the mental aspect that holds me back? A new thought as i have just recently got back onto a bike, a real outdoor bike, not just my stationary bike at home where i'm totally safe. Now i love mountain biking and the thrill of the speed and uneven terrain, But just getting onto a bike was a HUGE mental block for me, after 2 years of not being on one, i found it immensely hard to lift my operated leg off the floor and trust in myself not too fall. It was like learning to ride all over again, shaky, scared to death, the fear is so strong i wouldn't of believed it if i hadn't felt it for myself. Now i wonder how much i have such a mental block with the leg, i chose my surgery, i looked forward too it loads, planned and prepared for it and in no way it i ever imagined this surgery would affect me mentally like it has done. So that is a consideration for newbie's that are planning surgery, just to warn you that it can happen, and how to get over it and not be afraid of feeling emotional over your surgery. I found baby steps help and confronting the issue head on, with logic and common sense helped me. But most importantly TALK to people and share your feelings.

So i'm off on Holiday in a months time, and i'm really really looking forward too it. I will be resting and recovering in the sun what could be better. And i hope that i have a new action plan for the Right Hip by then and this holiday will be needed before the whole surgery recovery cycle begins again.

I'm hopeless at asking questions when i see O'Hara, Are there any questions you would ask him if you were me? And how would you phrase them as i'm hopeless at that as well lol? Any help gratefully received guys and thank you for always being there for me xx

Working Out and Physio

Well it's been a while since i last updated this blog, as i've been focusing solely on getting healthy, losing weight and getting rid of damn hip pain! And do i have any good news? Well so so really i have lost 10lbs which is lovely and certainly helpful for the hips. But pushing to go further and harder the hips soon push me right back just as hard and fast. The left seems to be magickally stronger and able to cope with a lot more than i could of ever dreamed of. Although if i go too fast it does shout alittle, but ice or heat and some rest soon knocks it back into shape. Whereas the right is still my biggest hindrance, just walking or doing steps on the wii (you know it's not high or hard to do) it flares up in a few mins, with aburning hot pain that not much will shift except alot of time to rest.

This puts me in a catch twenty two as my mind is mentally ready to keep going, as is my drive to lose more weight and tone up. But physically i'm still a broken doll, and is so frustrating to still be so hindered with hips after all this time. But staying positive i now can walk straight as those physio exercises O'Hara gave me have worked fantastically for this, sadly haven't cured the right as hoped. But i now have an appointment to see him again (after lots of begging and pleading via email and phone calls lol Bet he hates me now) For the end of May. I can't wait to hopefully get an answer and a solution as the right has now hurt officially for 6 years and i'm tired of it. Twice i've been told two separate surgeries would work to cure me from this pain and twice it's failed. Granted the extra pain from the left has gone, and this leaves me forever hopeful O'Hara can cure me from this right pain as he has never tackled this side only the left, and we know he has done magick with that side. It will be so good to get this sort of result on the right.

Workout wise i've been doing a 30 min step programme on the wii every other day or so, the yoga and muscle combo for 15 mins on days i don't do steps on the wii. I have done the O'Hara chair exercises every day 5mins x3 times a day. And various crunches and free weights for the upper body. Sometimes i try the stationary bike for 15mins at a time (but this bit me very hard on the ass today, super painful at the pelvic scar and top of thigh, Not sure if that's old dvt pain or actual hip femur pain?) And i use the elliptical trainer for 5mins x 3times in a day for cardio but only once or twice a week.

Cutting down on sugary sweets and drinks but not so i don't enjoy life, which honestly is hindering the full weight loss as i'm sure if i didn't have any treats i would lose more. But i don't want to be anal about it all.

Right guys i need more painkillers and a hot water bottle so i will check out for now. Hope your all healing well, and recovering from various surgeries, this hip journey is long and bumpy and i'm grateful i have you guys to help me through. xx

Working Out and Physio

Well it's been a while since i last updated this blog, as i've been focusing solely on getting healthy, losing weight and getting rid of damn hip pain! And do i have any good news? Well so so really i have lost 10lbs which is lovely and certainly helpful for the hips. But pushing to go further and harder the hips soon push me right back just as hard and fast. The left seems to be magickally stronger and able to cope with a lot more than i could of ever dreamed of. Although if i go too fast it does shout alittle, but ice or heat and some rest soon knocks it back into shape. Whereas the right is still my biggest hindrance, just walking or doing steps on the wii (you know it's not high or hard to do) it flares up in a few mins, with aburning hot pain that not much will shift except alot of time to rest.

This puts me in a catch twenty two as my mind is mentally ready to keep going, as is my drive to lose more weight and tone up. But physically i'm still a broken doll, and is so frustrating to still be so hindered with hips after all this time. But staying positive i now can walk straight as those physio exercises O'Hara gave me have worked fantastically for this, sadly haven't cured the right as hoped. But i now have an appointment to see him again (after lots of begging and pleading via email and phone calls lol Bet he hates me now) For the end of May. I can't wait to hopefully get an answer and a solution as the right has now hurt officially for 6 years and i'm tired of it. Twice i've been told two separate surgeries would work to cure me from this pain and twice it's failed. Granted the extra pain from the left has gone, and this leaves me forever hopeful O'Hara can cure me from this right pain as he has never tackled this side only the left, and we know he has done magick with that side. It will be so good to get this sort of result on the right.

Workout wise i've been doing a 30 min step programme on the wii every other day or so, the yoga and muscle combo for 15 mins on days i don't do steps on the wii. I have done the O'Hara chair exercises every day 5mins x3 times a day. And various crunches and free weights for the upper body. Sometimes i try the stationary bike for 15mins at a time (but this bit me very hard on the ass today, super painful at the pelvic scar and top of thigh, Not sure if that's old dvt pain or actual hip femur pain?) And i use the elliptical trainer for 5mins x 3times in a day for cardio but only once or twice a week.

Cutting down on sugary sweets and drinks but not so i don't enjoy life, which honestly is hindering the full weight loss as i'm sure if i didn't have any treats i would lose more. But i don't want to be anal about it all.

Right guys i need more painkillers and a hot water bottle so i will check out for now. Hope your all healing well, and recovering from various surgeries, this hip journey is long and bumpy and i'm grateful i have you guys to help me through. xx

Still Hurts

I have given these exercises a month now and although the left has gained so much stamina and strength the mobility is still hindering me from the right side only. I have returned to normal daily activities (ie, polishing, hoovering and normal ligh household chores) and walking as much as possible without a stick and as straight as i can (which is hard to do, and takes a lot of mental focus and easily exhausts me. And it keeps pulling me back into the depths of pain and despair, surely after a month this should of decreased somewhat and given me some ray of hope?

I have emailed numerous times with no luck, although i have tried again for the last time last night, as i'm at the end of my tether. I've decided to seek advice from my GP if and as and when i get to see her (as she is very very popular and hard to see!) And possibly get a new referral and even think about seeing someone else. The prospect of not seeing anyone for advice in the future even if that visit was 9 months away, that would give me some glimmer of hope and encouragement, as it is i just feel abandoned and discarded like trash.

Back onto more Tramadol which is not what i wanted, all along i've been tryig to reduce the amount i take, as they are not healthy. But as i increase my activities to a normal level, the pain flares up so hot and so painful that i have no choice. The pain is enough to drive anyone insane and lose interest in general life. So much of life is passing me by and i can't control this.