hello

[Elham88]

Hello everyone

1: I am  a girl with 27 years old, I have primary lymphedema in my right leg from 5 years ago. And it was starting  in my right side ND especially right hand from 1 year ago.  did you have similar experience?  Do my right side will growing everyday ? how much it grow؟ and what can I do for stopping  or Decreasing   its speed.

2: And one other question, I will make decision for having  baby . Please help me and  say how much it will be possible that I pass it on  my children ? Do you have similar experience or know  a good doctor that I could contacting with he/she by email. Because I am in Iran and there is not good information about lymph edema here.

[CCT67]

 Hi I am very sorry to hear you have Lymhoedema in your right leg.  I have severe Lymhoedema in my right leg and more moderate in my left.   May I ask who diagnosed your Lymphedema and how it was determined that you have Primary?  As you could have Secondary; there is a significant difference between the two types.  Primary Lymphoedema is thought to result from genetic mutations that result in impaired development of a person's Lymphatics from birth (however symptoms may not always be present at brith and can be very mild until later in life when they become severe such as mine in my late 40s).  As Primary Lymphoedema is a genetics related disease it does mean in theory it can be passed on to children if they were to acquire the same genetic mutations.  Secondary Lymphoedema doesn't result from genetic mutations and therefore is not generally passed to children.  

The main way that you can slow progression of swelling from Lymhoedema is by wearing suitable compression garments that are ideally custom measured. If you can't get custom measured garments then a ready-made compression garment/stocking is important to wear.  Perhaps you can get this at a pharmacy with a prescription from your doctor. It is also important to complete self Manual Lymphatic Drainage/MLD and a particular type of breathing to work the deeper Lymphatics as part of the MLD.  I do breath-work and self MLD every morning and evening for 30-40 minutes.  I also have professional MLD done by a trained therapist once per week.  Perhaps you are already doing self MLD?  If not I can give you links to videos that give proper instruction which is important to have.  Skin care of the affected leg is also important in order to avoid developing a bacterial infection called Cellulitis - those of us with Lymphodema are at risk of getting this. 

It sounds like you do not have many resources in Iran which I'm very sorry to hear. There is an excellent website that has both information and links to reputable research, blogs, and information from Lymphatic researchers worldwide.  The site is Lymphatic Education and Research Network based on the USA, it's linked with the Cancer and Lymphatic Diseases Research centre at Stanford University (elite American university). The web site 

  lymphaticnetwork.org/living...

Do you have the ability to travel to Europe or the UK to access Lymphoedema care? 

I imagine you feel isolated being in a country with few resources for those suffering from Lymphodema however there are lots of us you can find and speak to on the web! I'm sure others will also reply to your post.

Take care 

Cat

[Elham88 in reply to CCT67]

Thank you cath. I am very happy that have nice friend like you and other people here.

my doctor saying it is Primary , and my father and two my sister have very little Lymphoedema in their right leg. I know two type of Lymphoedema a little and I think this is Primary.

About compression I should say : I were compression bandage at  home and work( I am working in public relation of a private economy company full time) at home my bandage contain 5 steps: 1: Stockinettes( tg soft )/ 2: Mollelast (Lohmann & Rauscher)  3: Cellona (Lohmann & Rauscher)/ 4: foam / 5:  Rosidal Soft (Lohmann & Rauscher)  6: Rosidal K( Lohmann & Rauscher). And at work we bandage without foam. from 5 years ago it has made little progress and with good care and attention it don’t have very bad situation.

About message: first of time that I realize my illness. I went to a clinic and under supervision my doctor  I have got CDT message for 20 session and after finishing that I started MLD message  and every day I do it myself.

Now, my main fear is baby, because I don’t want pass it to my children and get their life hard.

And I work every day and after work I starting message. I want to know do this volume of activity is not bad for my leg and my body? What do you think? What is your idea?    

Thank you.

Elham

[Andy13]

Sorry to hear about you Lymphodema but welcome to the club. I hope you have a good translator. 

 I am male aged about 60 and was diagnosed with primary Lymphodema when i was about 15. My Lymphodema is worst in my right leg but my left leg and right hand Are also slightly swollen. I control the swelling in the right leg with compression bandages which I wear when not in bed.  I also try to keep my weight down, exercise and sit with my feet up whenever possible, that but is really hard :-).

As regards passing it on to your children that is probably a risk but not huge. I have two sister and a brother. Both sisters have primary Lymphodema, my brother does not. I also have three children now in their 20s, my sons are fine, my daughter's feet have swollen in the past but do go down if she rests them.

 The way I see it Lymphodema isn't case of 'you definitely have it or you don't have it'. The organs of human body are designed to be just good enough to do the jobs they need to do. If one organ is particularly good I.e. You have a very large pair of lungs, well then either you need to be a bigger than average person or another organ will need to be smaller, so it's all a compromise. People like us with with primary Lymphodema have a lymphatic systems but our lymphatic system just isnt quite good enough for what we're asking it to do. So we need to ask it to do a little less, for example keep our weight down, and help it, for example use compression and keep our feet up when we can. 

Hope that helps.

[Elham88 in reply to Andy13]

Thank you Andy. I am very happy that have nice friend like you and other people here.

Your writing was very good for me and I heard your experience about your family and your children.

These days I think to Create a community that gathering  my countryman that have Lymphodema and are like me. This is my idea.

thank you very much.