"Lugworm 21" tells her story on vasculitis

What is your name? Where do you live?

I would like to use my nickname "Lugworm 21", I live in Northern Germany.

When were you (or your relative) diagnosed with vasculitis?

In March 2009

Do you have a specifically classificied form of vasculitis (such as Wegener's Granulomatosis)?

Churg-Strauss-Syndrom, C-ANCA + associated small vessel vasculitis,  E, L, S, C

What symptoms did you have prior to your diagnosis?

since 1995:

heavy breathing problems always lasting for several days, sinusitis maxillaris, night-sweat, sleeping disorders, colds that wouldn't go away, soar throat, fatigue, diarrhoea, allergies, petechiae, miscarriages, joint-pains, swellings of joints, big itching irritations of the skin with petechiae, tachycardia with feelings of fainting

since 2005: additional problems with my vision, dry eye, dificutlies walking properly, paralysis and sensitivity-disorders in the left half of my body, nerve-pain, extreme fatigue, depression due to the long illness

since 2010: difficutlies in finding words, loss of memory, loss of intelligence, disorders in emotions

How did you cope with the news that you had such a rare disorder? What was the initial reaction on the part of family and friends?

I was relieved to finally having a diagnosis at first, later on I was shocked as I learnt what exactly I was suffering from.

Describe some of your experiences with the medical staff that has to deal with such a rare illness. What are the challenges and obstacles in getting information and the right treatment for a disease like vasculitis?

All my symptoms had been blamed on "hysteria" until 2009 - the explanation was that there simply is no illness with so may differnt symptoms as I had.

In Bad Bramstedt's clinic I was given excellent information on the illness, on the medication, on the problems that might occur. A therapy was started.

Family-doctors have difficulties with a patient like me, I am too "exotic", which I do understand. Since I have gained so much knowledge on my illness I try to reassure my family-doctor and by now things have improved.

I feel reassured by knowing that I can always contact either my family-doctor or the clinic in Bad Bramstedt.

What have been good and positive experiences with the medical staff?


Medical staff is always in a hurry

For a long time I was unable to find somebody to talk to on aspects of life-expectancy and death.

Some of the really serious symptoms of our illness are sometimes blamed on "psychovegetative/somatoform disorder" when the patient is totally down or crying all the time. That is dangerous.


Having been a nurse I have extreme difficulties showing my weakness and my illness - to myself, but also to the doctors that treat me.

After all, doctors have been my bosses for 22 years. It had always been important to be strong and healthy, that is what saved my job

Even today I catch myself smiling although I feel really bad, there is a huge discrepancy between the way I feel and the way others see me. That is one of the reasons, I assume, that it took 15 years until I had my correct diagosis.


Usually (except in 4 really extreme situations) doctors were always friendly, showed respect and listened carefully.

Doctors have become more open and more helpful in listening to my ideas and wishes regarding further therapy and/or my future life. I guess this is partly owned to the fact that I have learnt to express myself better and in more detail. Gaining knowledge on vasculitis, how it will proceed and how it will handicap me has helped me to a clearer picture of how my life with vasculitis could be /can be.

I appreciate living in a health-care-system that is really good. Once a diagnosis has been made, I have the opportunity to get proper medicatin and adequate therapy without having to pay for it myself, I really appreciate this.

What are some of the medications that you have taken or are currently taking? Describe side effects to these drugs and how you ) handled them.

[German Brand name (Active ingredient)]

How much has your normal life and routine been affected by vasculitis? What have been the positive and negative effects of your illness on your family. Respectively, how have you dealt with the challenges of caring for someone with vasculitis?


My everyday-life is happening on a small range, I am very easy fatigued. I have to lie down a lot, my breathing-difficulties make me weak, loss of wanting to do things and fatigue are very hard on me. I do have a lot of pain but cannot take any painkillers, because my vessels simply burst. Social contacts are mainly phone-calls. I have become "funny" to people who have known me for some time, even "stupid", that is not easy for me to bear.


I have changed: where I once was emotionally hard against myself and against others I am now a very understanding and caring person even when it comes to seemingly every-day-problems. The illness has made me soft and humble. I was forced to slow down, that has calmed me down as well. I guess I have found my inner balance.

What is the most difficult thing in dealing with a long term illness like vasculitis? How do you keep on fighting when things get to the worst point?

It is most difficult to watch myself deteriorating over such a long time. To see my own abilities getting less and less. Not to be able to leave the house. To notice deficiencies in my intelligence. Being helpless without being able to change the situation. Being dependent on other people's help, doctors, medications for the rest of my life. All that is hard to bear. I try to be strong, because my attitude towards life has changed. I live here and now, I enjoy every day the way it is, I try to see big things in small things, I enjoy nature, a smile, a friendly gesture, a nice word. My "emergency-plan" has become extremely important for me - I can work though it step by step in situations when I am really feeling bad without having to consult a doctor immediately. Knowing that I am able to help myself quickly and efficiently with the medication at hand makes me independent. That is a quality of life that I as a chronically ill person have nearly lost due to my countless visits to hospitals and doctors

How important is having a support group in your recovery?

Very important, I am a member of a support grop for chronically ill since December 2009.

Understanding each other's needs has become vital for my psychic stability. I was able to get off antidepressiva completely in 2009, because I had learnt that depressions, phases of deep sadness and pains in my soul because of my illness cannot be healed. They will accompany me as a humand with feelings until the end of my days. I don't feel so alien anymore when I get sad that my life turned this way. In the vasculitis-chat I exchange thoughts and ideas with other patients.

In what ways has the Internet been a part of your understanding the disease?

The internet provided the best information on this illness. In the vasculitis-chat I was allowed to vent, when I had to stop venting at home - I met nice people and even found friends.

April 2012