Lymphoedema and Covid19

[Lynora]

This email was sent out by the Wittlinger Therapy Centre, Austria, earlier today - it explains a lot in an easy to read way:

Dear patients!

Since we have received more requests in the past few days about whether people with lymphoedema disease have an increased risk of COVID 19 infection, we have summarized the essential information for you.

As a lymphedema patient, you are not one of the mentioned risk group due to your immune deficiency, because this immunodeficiency is only locally limited to the lymphoedema affected areas of the body, such as mostly legs or arms.

You only have an increased risk of covid-19 if in addition to your lymphedema disease, general risk factors are added to it such as

• older age (over 65)

• chronic lung diseases

(Asthma, COPD, Pulmonary fibrosis)

• Limited heart performance

• Diabetes mellitus

• Immunosuppression therapy

(after organ transplant, rheumatherapy with cortisone therapy)

Lymphedema patients also have no increased risk of severe disease in the event of COVID 19 infection.

According to the German Cancer Research Center, there is currently little information on how cancer patients react to an infection with Corona. However, since they can have a weakened immune system, they could also become more severe with Covid-19

With a good body hygiene that you should always keep due to your lymphedema disease, you reduce the risk of contagion with Covid-19. Especially frequent hand washing, disinfection and skin care, we can advise you to avoid infection.

If you are prevented from getting the necessary manual lymph drainage because of the initial prohibitions imposed or due to the closure of therapy institutes or practice, you will intensify your learned gymnastics programs to decongestion. Note that you are bandaged or wear a suitable compression stocking and apply the lymphatic drainage handles you have learned several times a day.

If you wear a compression glove or arm stocking with glove, we recommend to do the following (source: Homepage "GDL"):

Most compression stockings manufacturers advise to follow the washing instructions on your clothes, but make sure to wash your compression stockings every day. We were told that antibacterial handles don't damage the clothes. Most compression stockings can be washed in the washing machine at 40 ℃ and then dried in the dry dry cleaning of the tumble dryer. If your compression stocking cannot be dried in the dryer, dry it thoroughly in the air before use.

Most compression stockings remain even after approx. 100 washing processes in good condition, but if placed in a net wash bag, they are even better protected.

You can wear a disposable glove over the compression glove for extended periods of time a day if you are working in a profession where you often need to wash your hands. Please remember that the glove is used to prevent contamination of your compression glove; it will not protect you from the virus. The virus can live on the plastic glove and be transmitted in the same way as by your hand, so the same rules apply - frequent washing and changing the glove.

For some people it may be a challenge to get a disposable glove that fits over the swollen hand. You may need to experiment with the sizes. If you can't find a suitable size, talk to your therapists to see if it's appropriate that you temporarily change the glove when you wear it.

Carry a spare compression glove / replacement compression stocking in a sealed plastic bag if you fear your glove may have been contaminated. Put the polluted glove in the plastic bag and lock it until it can be washed and remember to throw away the plastic bag.

Should you develop signs of disease such as fever or symptoms similar to flu (limb pain, fatigue chills), call HOTLINE 1450. You should also indicate that you are suffering from lymphotline to give the opportunity to the hotline to query fever and chills as a symptom of an erysipel and differential diagnosis.

We hope we can take away the uncertainty with this information and wish you all the best and good health!

Your team from the Wittlinger Therapy Center

[buddlia12]

Thanks Lynora, for sharing this, it easy to understand despite the minor errors in translation. And suports the excellent advice of LSN.

[Quartz22 in reply to buddlia12]

Yet if we are in the older age bracket and have Lymohoedema then we are still not in the group that are identified to self isolate for the 12 weeks . Doesn’t make sense to me .

You would certainly think it’s logical that your immune system just wouldn't work in the area of the body that’s infected but for some of us suffering go with the condition we know that we seem to be more prone to picking up Illnesses and that they can affect us quite badly even if it’s not related to our particular limb . Considering how little research has actually been done on how Lymohoedema affects the body , I don't know how they can say for definitive that this is the case .

[buddlia12 in reply to Quartz22]

My advice would be , If you feel you , for any reason, meet the criteria fr the self isolation , longer term, advice.... then do just that. The less we go out and come in contact with others the less the virus will spread. If you feel you have an increased risk, follow the 12 week advice. It will safeguard you and others and the NHS.

[kHP22 in reply to buddlia12]

Many thanks for your reply . I have already made the decision to isolate for the twelve weeks , it’s not worth taking any risks . I’ve also had surgery within the last year so I gave added concerns . My main objection is just that we are never officially recognised for our condition . There’s still no protocol for treatment which I know the LSN are now working on now but everything’s so slow and in the meantime we have to live with all the lack of understanding and coordination especially if you have other conditions as well . No one ever looks at us holistically . Each treatment is carried out in isolation . I’d like the condition recognised as a chronic long term condition and for research to be carried out on how it impacts on us as a whole .

[buddlia12 in reply to kHP22]

Wishing you well. Lymphoedema services in the UK do try their best to treat patients holistically and certainly individually, although of course, funding for services may limit what treatments can be offered. There has been some research about the impact of lymphoedema on those living with it and LSN are working tirelessly as advocates for this life long condition. The slowness of `success' is similar for many other complex, life long conditions. I guess we're all trying to get a gallon out of a pint pot! I think your decision is wise . Take care.

[Marjol80 in reply to Quartz22]

I think the same. I catch viruses very easy every year. Common cold turns to chest infection. I do not totally agree with above statement either. I suffer from lymphoedema from 16 years and i can say that my immune system is lower then in healthly people.

[Whitesugar]

This list is not the same as that recommended by our government in the UK so should only be taken as a guide.

[Hidden]

Just repeating my message that you can self register to go on the vulnerable list at;

google.co.uk/url?sa=t&rct=j...

My local authority has offered support because I get assistance with putting my bins out because of my Lymphoedema and I live on my own.

It’s worth investigating what your local authority can help with.

( I am not on the govt’s extremely vulnerable list and I’m comfortable with that.)

Wendy