Webinar: Pregnancy for Aplastic Anemia and PNH provided by Britta Höchsmann (Ulm University Medical Center (UUMC)) and Alex Naylor (PNH Support)
ERN-EuroBloodNet Topic on Focus on aplastic anemia (AA) and paroxysmal nocturnal hemoglobinuria (PNH) for patients and their families is coordinated in collaboration with the following patients associations: PNH Support (focused on PNH represented by Maria Piggin, ePAG of the ERN-EuroBloodNet) and Lichterzellen (focused on AA and PNH and represented by Pascale Olivia Burmester) and EURORDIS.
It aims to disseminate very topical areas related to AA and PNH among the patient community in order to give visibility to the medical services available in Europe, recent quality of life cutting-edge advances in the field of this rare condition (or even very rare, as for PNH) and their treatment options.
Each session is moderated by a duo of an expert physician and a patient representative, who host the session together. First, the physician introduces the topic and shares clinical knowledge. The patient representative ensures that the information provided are accessible to patients and their families and also highlights which are the key crucial concepts for patients to the expert and asks for clarification of these for the webinar audience.
Question&Answer session will be moderated by Maria Piggin (PNH Support and PNH Global Alliance) and Pascale Olivia Burmester (Lichterzellen and PNH Global Alliance).
Other patients representatives participated to the educational program: Isabelle Flaguel (French Association HPN France Aplastic Anemia), Ulrike Göbel (The Aplastische Anämi & PNH e.V. ), Alex Naylor (PNH Support).
Also patients organizations participated in the educational program: French Association The Aplastische Anämi & PNH e.V..
The content of the ERN-EuroBloodNet’s YouTube channel is carried out within the framework of European Reference Network on Rare Haematological Diseases (ERN-EuroBloodNet)-Project ID No 101085717. ERN-EuroBloodNet is partly co-funded by the European Union within the framework of the Fourth EU Health Programme.
ERN-EuroBloodNet is one of the 24 European Reference Networks (ERNs) approved by the ERN Board of Member States and covers Rare Hematological Diseases (RHD). Please visit the EuroBloodNet’s website to explore different initiatives we work on and how we can support patients and health professionals in the field of (RHD). http://eurobloodnet.eu/
Funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or European Health and Digital Executive Agency (HaDEA). Neither the European Union nor the granting authority can be held responsible for them.
Music: Mister Lady, by Freedom TrailStudio
[Applause] [Applause] [Applause] So um as you know the this session is part of a comprehensive uh program that consists of uh several webinar that Target patients community and people so family and patients living with a plastic anemia and P the name is the topic on focus on a plastic aneman P for patient and family
It has been organized of course by the neuro blet but with the fabulous support of the patients Association so the p& support uh focus on P represented by Maria pigin and also Len focus on a plastic aneman page and represented by Pascal Olivia burer and also um
Ordis and of course P Global aliance today we are going to talk about pregnancy for plastic anemia and p& as always as you know um we have a Duo of an expert clinicians and a patient advocate um presenting the the topic so today we have as a patient
Representative today Alex nyler she’s a British p& patient that was diagnosed in uh 2017 and uh when she was mid3 uh shortly after she begin treatment on solares and she became pregnant and now has a five-year-old son uh so she she will talk about uh this experience of uh pregnancy and then with
Us uh we have dror Osman um that is of course actively uh involved in the European Society for buaro transplantation um and she’s an expert of uh this topic also so shall I uh jump in and just talk a little bit about my personal experiences um and
Um some of the things that I think we will want to cover um just whilst all of this is going on um so yes hello my name is Alex nayor and um thank you for the wonderful introduction mariangela uh and uh yes um my memory is a little hazy from going through
Pregnancy five years ago and uh I found out I was pregnant very shortly after starting ciris uh or EAB and um throughout my pregnancy uh it was pretty clear that I it was a high-risk pregnancy but that I had a very joined up team who uh leased with the Obstetricians and The Midwives
Quite regularly um I think Brit is about to join us um and uh one of the main things that I think is really important if you’re considering being pregnant is making sure that you are uh completely open with your hematologists and your Specialists your p& Specialists and
AA uh Specialists but also that you build a really good support network around you of the Specialists and that you know exactly who is the person who is accountable who you speak to first and foremost if and when there are any problems during your pregnancy so hello Britta hi so hello
Everybody um I was just giving a little opening about myself and my experiences and uh mentioned how important it is I don’t know if you heard that you have an open relationship with your Specialists and your hematologists uh and you have a good support network around you uh before you even become
Pregnant and that’s where we got to so should I hand over to you brua so um like you heard we are talking today about pregnancies and could I have the next slide please uh so these are my disclosures and the next one please yeah I think um the main questions are if uh
Pregnancies are um possible and uh what are the risk and what are the recommendations then next one please so um I think uh we have in plastic inm nature a special situation uh because uh it’s a chronic illness and uh even more it’s a rare um disorder and
So I think we have uh to take in account the quality of life and the prognosis um and uh the special um points like uh the reproductive requirements and the treatment option and uh if you look um uh on the sum you will uh see the relevance of the F
Family Planning the next one please um as we have now um much better um treatment options for par Mal nocturnal hemoglobin Ora um uh this topic of Family Planning is um increased in in relevance um so um I think all p& patients uh know that uh in former times
The mortality of P patients was uh really high um and uh we could now reduce this with complement inhibition so uh that the life expectancy is nearly the same like in um healthy people uh I think the Family Planning issue is uh um important as um uh a lot of patients uh
Are in um in the age about 30 to 45 at diagnosis so it’s the age where we uh usually uh look for family and pregnancies and so on so the next one please um so um I just told this this not this afternoon we we talked and laughed about
That but uh I think uh to to get pregnant we need two persons and so uh also the issues of the male P patients are of relevance uh so um uh due to the fatigue and anemia I think there an impa and um interest on the one hand on the
Other hand uh we all know that due to complement activation and intravascular hemolysis there’s also um the um the case of an ereal dysfunction um in penage patients not so uh rare so the next one please uh on the other hand uh we have the same situation in the female
Patients I think fatigue anemia um is not dependent on sex and uh we have additional and impaired nidation so um the problem is to get um pregnant due to circulatory disorders and microtomy the the next one please so um the risks during pregnancy um are mainly due to complement activation
So uh we have an increased hemolytic activity and the associated risk of that during the uh pregnancy so uh we have a change in the blood counts uh normally we could have hemolytic crises due to the complement activation and drum embolism in mother and child um and uh
You could have a fetal damage uh due to the trabol events or anemia or or circulatory disturbances and uh there are often premature birth with a l low birth weight the next one please uh these are data um several years ago before we had the option of complement inhibition during pregnancy in
P& uh and you see here the analysis of 27 pregnancies um uh of p& patients and you see that we have here a really high rate of complications um uh in Ms as well as in the child so we had uh 95% uh of uh page patients during pregnancy with um with
Complications um mostly not very um not very difficult like um cytopenia anemia with a need for transfusion but also 16% uh of trombosis and 8% mortality rate and uh I think um you see that really quite a number um the same uh is uh in the in the child where we have an
Uh mortality rate of uh 4% um and um relevant number of impaired fetal development so I think you see um based on these numbers um the cause why we um um um explained our per patients in earlier times uh that we can’t recommand pregnancy and that they should
Avoid this um um because of the potential risk the next one please um so um after um the availability of complement inhibition uh the situation changed um we uh had the first pregnancies during um the um uh trials um of uh eulit up I think because
Of the reduced anemia and fatigue and um the increasing activity uh and um uh after the positive experiences we um um treated more patients with uh eulit suap during the pregnancy and you see here an analysis of 75 pregnancies in 61 page patients and you see uh here the
Mortality uh of the mothers were um n% um there were um just uh 3% TR abolic events um and um we have no um High not a high complication rate um also in the uh in the children so the next one please so I think I um will not go in
Detail because of the time um it’s just important uh to know that there are no development disturbances in Children of P patients uh with e ealum treatment during the pregnancy so uh you hav to have a fear regarding uh this during um the pregnancy so the next one
Please um uh the main point um is um that um we have um in bleedings in 10 uh patients during this analysis um I have to mention that we um recomand uh um heparine uh prophylaxis during pregnancy uh in p& um and we have two um Trump embolic
Uh events um but not during the pregnancy uh but uh after um the the birth so um we couldn’t uh say at the moment if uh the Haine uh is of benefit for the patient in this situation uh the next one um um we had an an analysis of the
Umbilical C blood and uh the uh breast milk and um just to sum it up there are no concerns about breastfeeding um and um there were in a part of the patients equitum up in the C blood um but um there were no abnormalities in the examined newborn in
The complement system so the next one just uh to to say uh between the the slides so I will go um uh fast uh through this because we we had this uh problems in the beginning but uh please uh just uh take this as an invitation for uh for questions afterwards so um
Important point is that we have the option to to eitm map treatment to control the hemolytic activity during uh the pregnancy and um therefore we have um a better outcome up to now we see no um uh effects on um the uh the uh children
Um so that we have uh no problem with the recommendation the next one please um so uh at the moment uh we recommend um the patients to monitor um in regular distance for hemolisis uh we can adjust the equitum mapos on demand therefore it’s important
To know if uh the holis is increasing we also recommand the hippin prophylaxis and folic acid um in high doses and vitamin B12 as uh needed transfusion should be given um on demand so we um recommand um aoide concentrate transfus transfusion um in cases with a hemoglobin below 8.0 the next one
Please um the uh further recommendations are to do um Regular ultrasound control of the um perfusion and the fetal development um it’s um uh if it’s possible uh 3D uh ultrasound is uh good uh thing because you can really see the the details then um I think that is important because you
Can see then very early if uh there is the disturbance of the development um so um the most important point is that um it’s important to have an expert and a network um uh which is it’s working to solve possible uh problems and complications um because uh if you have
Uh this network it’s usually well manageable um and um the pregnancy uh should uh not be combined with uh relevant risk but it’s a highrisk pregnancy so you have to look for the Specialists and the center the next one um we have a um similar situation in
A plastic anemia uh with an improved prognosis and um so especially in young patients in a child being age um the Family Planning is also from um uh relevance the next one please so also there we have the problems regarding fatigue and Amenia and impotence and additionally the uh
Problems um of uh reduced sperm count and motility after stem cell transplantation and a negative effect uh on the sperms due to cyclosporin treatment and these are the problems of the male and the next one please um we have uh this um toxicity of cyclosporin especially due to the uh
Sperms I noticed this earlier so I think we uh Haven to go in detail here the next one please um so uh in uh in the women uh we have to say that we have no um hints that the use of cyclosporin um is of an increase of risk
For uh for the pregnancy regarding to uh malformation or miscarriage or um uh neonatal complications or development impairment so um we have um the clue that there might be um higher rates um of pre- delivery um in the first three months um but it’s unclear if this is
Due to the a plastic anemia or because we are looking closer than in uh regular uh pregnancies so the next one please uh in uh atg uh we have regarding to atg in pregnancy we have uh less uh data but up to now now there are no um
Reports of um fetal adverse effects due to atg and um therefore atg therapy is indicated uh and should not be um um um um delayed um to avoid um uh difficult and um risky cytopenia complications so um um this immune suppressive treatments uh can um ex created in the breast Mi so
Um here uh breastfeeding is not recommended for the patients the next one please uh so uh stemon transplantation is I think um topic of um upcoming uh event in the end of the month or the next month um I think you will be informed about that the next one
Please thank you um so uh the risk in the plastic anemas are for my uh from my point of view um higher than in p& um we have the situation that a blastic anemia usually bursens during the pregnancy um uh there series um of patients uh who showed that um
Especially significant decrease of the blade blad count uh has a special risk and we have the problem that uh bleedings and sepes um are um uh a reason for death in pregnant woman with a plastic anemia um and um the cause is not um sure up to now but but um postulated
That there might be hormonal influence um next one please uh so we uh um recommand the following procedure for plastic anemia um so um the patient should think twice uh about the decision to get uh to get pregnant because of the serious risk um it’s um not
Um um uh it’s not helpful to wait uh with treatment um uh until um until delivery um because uh the highest risk are due to the pancitopenia and not due to the treatment um so um we uh recommand um to um started treatment with imuno supression the next
One um so um one point um you should um look if there an option for uh cry conservation in every case so I think this uh might be a point um just to mention so um um again uh we recommend to start an immunos supression um if um it’s indicated
Um the uh supportive management with transfusions uh should be done um up uh hemoglobin uh value below um 8 gram per D lit and a bladelet count below 20 Giga per liter if possible um cyclosporin could be avoided in the early pregnancy due to this uh um possibility of an higher uh
Miscarriage um due to cyclos spin in that time and again um like in uh p& the most important point is that the pregnancy is supervised by an specialist in combination with the other disciplines involved the next one please the next one please I’m sorry they are not changing ah
Okay I was sure I will stop sharing a sh still away so I’m still there with you that’s a good information it was me I mean it was me was the Doom today it’s really not helping I’m really happy that the 20 um participants still are um as patient to
Uh staying with us so it’s not working um Mario pasc can you maybe try your to share I will try last time I can try okay no it’s not work so I I will just should I just talk a little bit on so because I have now you just let me know which
Slide it was so I can share the 25th 26th okay yes the now to 26 yes but otherwise I can just talk without the slides there are still two additional ones without pictures so um I will just summarize um the the problem problems uh of family planning in sorry yes no
Problem I will try it on the old way old fash can you see it yes yes I can just I can just slide on my laptop because I’m I am here with the iPad and I have so let me just share the the um so but it’s just a summary of the of
The problems we have to solve um the first one is that we have a difficult ulties in in getting pregnant ah okay here we are so um due to the mentioned fatigue anemia um this problems with nidation or sperm function and on the other hand we have the risk for mother
And child during the pregnancy we have the the risk especially in the P um due to hemolytic crisis and trob bolic events and uh we have risk especially in a plastic anemia due to bleedings and infections we have in in both um um the risk for um delayed fetal growth or
Abortions uh or low um birth weight this is caused by an insufficient um um circulatory or low hemoglobin and uh low um O oxygen uh in in the placenta um the next one please so um the take-home message um should be that um we have um due to a
Better prognosis of a black sck anemia and P um uh uh higher importance of the topic uh of Family Planning um there are um improved uh therapeutic measures um who have uh increased uh the the CH chance to um make a pregnancy possible um and um compared with the
Paths the risk due to the pregnancy uh has decreased so but the most important point I I just um can say it again is um that this is only the case if you are uh supervised by an a blastic anemia or p specialist during the pregnancy and in combination with uh the
Other colleagues involved so I think that is really the most important take-home message um you have um to uh be in contact during the pregnancy with the specialist um to um have um a safe pregnancy and delivery so um now I open for questions and discussions and um
Yeah thank you Bretta that was really useful um and I have a few questions that um I think that we could touch on um one of them is that um we all know that uh AA having AA and having p& can be quite lonely and isolating and also
Pregnancy can be one of those very isolating periods perod of a life so um and you’ve talked there about um the hematologist Specialists being the most important uh people in the dis in the multi-disciplinary group and I just wondered what sort of other advice you have for patients about how they can
Build that Network um maybe about how organized they might need to be or how um you mentioned about being in contact with a specialist center um what sort of the what are the sort of like Grassroots things that patients can do so I think um one point which is not
Very um meical sophisticated is um that it um would make sense to get in touch with uh patient groups um I think you have the option to find their patients with similar experiences and I think that would in in every case have to feel not as lonely so um I think that might
Be might be helpful the side of the the side of the physes um uh on the other hand um I think um the building this network um is uh possible if you just uh talk talk openly with with the Physicians so um it’s important um
To um to tell them that they should just communicate uh with the p Specialists so I think you have um this P or plastic anemia specialist in the center of your network and um uh then you have to uh to look for the context between uh the several
Disciplines and um I think that is really the the most important point and um if the you have always the question if if there is an option to see which one is the best one for this situation um I think um um important is that the position you choose is
Um um will con will get in contact with the hematologist I think that is important that he uh he has no problem uh to communicate and uh to to be in contact and uh also to to ask questions so um sometimes uh this is not so easy
Uh to learn that um perhaps um it’s better to go to another person uh with with questions so um I think that that is uh um it’s a point you can do you can say Okay um please um if there’s a problem get in contact with uh this hematologist
Who is uh who is um responsible for the P Ag and um I think it’s it’s um it’s a good thing just to to um to tell the Physicians that you know and you do not expect that they are familiar with pnh or plastic anemia because these are very
Rare disorders and so they have not to be ashamed that they are not used to um care for patients with te and in this context um I think you you should try to uh introduce your hematologist thank you and we have a hand up from Analisa um yes can you hear me
Yeah okay thank you thank you very much for this um speech it was very very useful especially for me because um actually I was pregnant four years ago and now I’m a patient I didn’t know to have the ph& um I’m From Italy and I’m representing the
The association of Italian patient of p& here H actually I was exactly in the cluster that you represented very well regarding the new war that was uh in a way before the termine and high had issues and she was she a girl she was born below three kilos so actually
Exactly as you said in the slide unfortunately I didn’t know to have the P un unfortunately this is a disease very rare as you said uh being contact with theologist is important when you know to have it my question is I was lucky because even though I didn’t know to have my
Pregnancy was since the beginning to the end pretty good I had sever issues after and it took one year in order to understand which kind of issues I had the point is which are the in your opinion in your experiences considering maybe more more patient that you saw
Which is the an exom that maybe the gcue can look at to have a sort of Doubt regarding this kind of of disease because I think that maybe very few but some women like me discover the page afterwards I don’t know my my question maybe are
Two how many women at a pregnancy uh without knowing to have it and uh uh if I am one of the few cases which are in your opinion the the stuff that you can also do maybe inside our association to to acknowledge some uh some uh some examp for example
I’m very sorry but um I had really problems to understand you because there was was a little bit surrounding so I don’t know um Alex um she was Analisa was asking um um sort of what can be done or how how what is the pathway for women who find out
That they have a plastic anemia or p& during their pregnancy as was the case in her scenario exactly than okay okay so um uh it’s not uh so um so s that um especially a plastic anemia is diagnosed uh during um during uh pregnancy and um I think um in that
Context you have just um to go on with uh with the with the treatment of the plastic anemia and um uh have to look closely for uh for the Le values and um but in that case I think if you have an an um um um diagnosis and of the plastic anemia uh
So the colleagues will be very close um regarding your left uh value so um I I can’t hear if it was a severe or very severe um a plastic anemia and um what was the treatment of that so um I I’m sorry there were some connection problems
So yes actually see you sorry I’m going back to from work so the connection is I’m sorry I’m on the bicycle no unfortunately ly I didn’t have any kind of treatment because they discover me the p& after the pregnancy so that was my issue so um um I’m just representing a very very
Very casing which at the end it was afterwards so my my question was uh I mean um I did a lot of some blood analysis every month before and nobody was able to to understand it I’m asking you in your experience if there is a special exam that maybe can
Foresees this kind of situation so um we we have um uh the situation that um we have um um a part of the patients a percentage of of the patients who have the diagnosis of a plastic anemia or p& during uh during the pregnancy and I
Think there are two points um on the one hand um it’s uh just um um um getting worse due to pregnancy so you have the case uh in tnh due to the increased complement inhibition you you uh just see clinically diagnosed D which were there perhaps
Earlier um the same in uh in a plastic anemia you have on the one hand the situation that um you have a worsening could have a worsening of cytopenia due to uh um during the pregnancy there discussions regarding uh the um uh hormonal changes as cause for this um or um you
Have sometimes a situation that um you just mention it without clinical symptoms because during pregnancy you start to make uh lab values so um these are I think these are um the the main um the main options uh uh uh which lead to to diagnosis during during
Pregnancy and um so if you are if you are pregnant and then um you uh see that you have these disorders um it’s uh it’s also the same so if you have th you should start immediately with complement inhibition it’s really important to to start uh fast so if you have NE plastic
Anemia the aim have to be to um uh to um get an insufficient hematopoesis because the uh highest risk in the blastic anemia is due to bleedings and infections and um so um yeah I think this are the recommendations I don’t know is it with this help yes absolutely many many thanks
Thank you yeah welcome and then we have have we have coup questions in the chat and uh one of them is if p& patients are currently not on treatment due to loone clone size then get pregnant wa onto treatment or just be monitored further and if they do then
Start treatment would this then be permanent or just what pregnant or needed yeah nice question um so uh it’s not uh it’s not as easy so if you have an if as if you have an ph& clone uh with perhaps 5% uh in a plastic anemia and you have no clinical
Symptoms um uh I think uh I would not start with complement inhibition but follow you very closely if you have an p& flone about 20% and perhaps a little bit of um of clinical symptoms um I uh think I would start if there’s a little
LDH increase uh but it uh it have happen to be very high so um yes uh I would also start patients um in patients compliment inhibition uh because of pregnancy um uh but uh in uh in special circumstances but I would be um very flexible regarding this and uh the
Second one is uh that um we can um we can try to to stop um the compliment inhibition after pregnancy yes that is an option um in the M most cases uh I I had with this constellation um the women recognized due to the complement inhibition that they had before start of
The compliment uh inhibition uh more symptoms than they thought to have so they just uh mentioned after start that they are had more fatigue before start and that they are feeling um very well with complement inhibition so sometimes we have the situation that we just go on after pregnancy with the complement inhibition
Thank you Daisy was that a good answer to for your question okay I’ll take that as a yes Daisy um so Kirsty asked oh yeah she she said thank you perfect so Kirsty asked uh on p& you mentioned eum M but is there any data on other treatments for
Example R up or isation to switch to e up so we discussed this earlier um this afternoon um and um so I I thought um um with with the DRS I um would not do so we have now the option of proximal complement inivision um this uh I would would not
Recommend that and if you have if you are patient with proximal complement inhibition I would change this um to C5 inhibitor in every case because we have no um we have no um idea um regarding to the E and we have now um long experience
With uh with equal nearly 20 years so um the question regarding Eis and um uh R um so I I would beg you to to take this not as um official recommendation um I personally have um good experience with ritum in pregnancy and therefore I would not recommand to change it back to
Equis so I I hope this uh helps you um at the moment yeah maybe we could say something like the there have been cases um of women pregnant on Ral much not scientifically approved yet yes so I think that yeah I think that uh will match the situation the moment I try to
Um to collect this that we have the base for uh for a potential recommendation or just to um have the option to um estimate this uh situation better but um yeah so um at the moment I personally but not as an official recommendation do not change uh ralit up
To equitum up but if I would have on patient on C3 inhibition I would go back to C5 inhibition to equalis if any of you become pregnant on rum please contact Dr hman okay so Alex um do you have any sorry sorry one one point um the thing
Uh which is not so easy therefore it’s really important um to get in contact with people who are um done this before it’s not just a joke um is uh that it’s a little bit more difficult if you have more hemolisis um regarding uh to the action
So if you have eolis ping pregnant and you have more hemolysis you know okay we give you now additional 300 mgram or we shorten up the interval and there are just um certain rules or experiences and this is is a little bit um more difficult with ravit because of the
Longer interval so um therefore it’s important to talk to someone who uh done this before Alex do you want to go on um I already had one more question which relates to where patients can find out more about um being pregnant with their Illness but I noticed that there’s
A couple of questions that relate to AA on the chat and maybe we should answer those ones first if we have a quick piece of time yeah okay there’s one uh from V uh good afternoon my question is for people with AA post horse atg would you suggest not to embark on pregnancy
At all are the risk too much for people with AA that want to start a family so the the problem in a plastic anemia um is um especially um if you uh had uh a treatment uh and uh in response now that you will have that you could have
Uh a relip during uh pregnancy so um therefore I think um it’s more difficult for patients with a plastic anemia um blend the family um because it’s uh I say kind of easier now in in pnh regarding to complement inhibition because that’s the drug which uh acts really fast if if
There are hemolytic crisis but uh in a plastic anemia you know because you you had um uh atg and cyclos spin earlier it means needs time and sometimes a lot of time um before you have the response to um to the treatment and um this might be really risky uh regarding to neutropenia
Or or tropia um therefore um I think it’s it’s um it’s more difficult um on the other hand uh we know that we had um that we had um a percentage of the patients who um just uh normalize the blood count after after pregnancy um yeah so but I I think it’s
A a more difficult decision I don’t know is this I I I know this um I think not the answer you would like to hear but um he says thank you so I think yeah so um I did have um another couple of questions which kind of tie in
Together so I might ask them together but it was about again um more on a social side for patients in that um having a rare disease means that you can spend a lot of time having to explain yourself to people and obviously with pregnancy you have a lot of appointments
With people that aren’t Specialists um and so do you have any tips as to what are some markers that patients should be aware of so they can be educated and say oh I think that’s important I should talk to my specialist or possibly some ways that they
Can give an overview perhaps of their illness to say a midwife or another interested healthc care professional without taking up time of their appointment on just their illness and not actually what’s going on in the pregnancy um yeah I think I it’s really in important question
Um I think um it’s um one point um which is important is just to let your uh contact dates of of the uh the contact dates of your of your specialist of your hematologist um on every place that you give everyone um an um a doctor’s letter and and then the
Necessary information so go active to the to the college and tell some about your disorder yeah um my experience is that the most are are then um interested and and inform uh and and uh look for information um I think that is is a thing that is important I had one
Patient who uh who was not telling this the the gynecologist uh the local one so I think it’s important just to be open to be open with that and um uh I think the um uh you get uh information uh on the one hand of uh of your from your physician um important
For you is to know um uh some triggers where you have to be get active um so um I think it’s important that you look for the blood counts for clinical symptoms uh for LDH or the very focused um that the doctors will look for the um uh
For the baby and the development and that if you hear oh it’s a little bit too small for the age or but will come and so on just um be very careful with this information because uh it could be a sign that um there is not enough
Circulation there is um um a problem that you could solve for example by transtion or by complement inhibition so if you get um information like that uh please um be active and um um go uh to your uh go specialist if um the local doctor uh will not um uh just active uh
Be active or um look for this further on so I think there are some trigger um where you uh should just uh go further and and uh and ask uh for um the courses I think that’s important and for F overview um uh please correct me um um
Pascal um um there are often informations of the patient groups so I think that uh it’s often a good overview and um for me you you should not be as uh you haven’t you haven’t to treat yourself so I think it’s important to have information um especially the information who
Triggers you to be to be active I think this also as you’re talking Bretta um it reminded me of a situation in that when you go to midwife’s appointments um they are also taught to look out for uh other things and other situations sometimes in like the case of like domestic violence and
They might be looking out for things like large areas of br bruising on your body which of course if you are taking Heparin or you are uh have a low PL account then of course you tend to bruise easily as well so I think that’s a case where it’s really important to be
Educated on your illness so that you can answer those questions and then divert somebody to a specialist if they had concerns yeah um and and then also additionally um in my experience I know that I was feeling a little nervous about um uh getting close to delivery I was
Nervous about um kind of like the what if situations and what if I had to have a cesarian what was the bleeding what was going to happen with bleeding what was going to happen with my um my treatments and uh I think it was my obstetrician but I’m not I can’t quite remember
Suggested that I actually sit down and meet an anesthetist to talk to them about it and that was a really useful experience so I think it’s important that um uh during pregnancy patients are um forward in coming forward and forward in asking questions it doesn’t there’s no silly questions in this scenario
Really yeah I think I think helpful would be if you have one person you talk talk with it’s a little bit difficult if you have uh three different persons and you have always to explain um the same I I think it’s um it’s a um a difference
If you have three uh um um Specialists from um if you have an an hematologist and the gynecologist and the anes but but if you have uh three trinal lists where you have to explain um every time um again the problems um it’s uh it’s
Not so easy so yeah and and maybe it would makes sense to say that the hematologist should maybe take the lead and it’s important to get all Specialists like the gynecologist and the hematologist to speak to each other and uh ask them to to um get educated or supported by the
Hematologist and also maybe uh if if you I think with such a r diseas you you won’t find adequate information anywhere written out you probably have to search for it and I think the um idea of talking to your National patient organization is not bad because even if
They don’t have information material on that they can tell you who is the specialist in your country for that and who you could ask or who you could talk to and uh such things I think the hematologist should be in the in the center of this network and
And my experience is that the the colleagues you are in contact with the colleagues and um you just give them the information regarding to the disorder and the point they have to to look for very closely yeah so um I think that that network is really um important and
So they happen to ask you again and again because they get they get the information also from from the hematologist the one and only chance I I have something yeah okay I have something um I would just like to mention that it’s extremely important that all patients with rare disorders uh
Just join in registry and so we have registry for p uh at the moment and we start um hopefully very soon um an another new rede and um in a plastic anemia we have in uh Germany a redri tree and I think in in other European countries uh as
Well um and I can just in invite you please um participate in Registries because this is the only option to answer uh such special questions in in where disorder and can you maybe say why this also has an effect on future pregnancies and maybe just explain uh you could
Explain what a registry really is I think that’s really important to so that yeah yeah yeah yeah okay you see um this data um we collected in 2015 uh regarding to eolis map uh in uh in pregnancies based on the registry dates and um without that Registries we
We have not no um option to uh collect the data and um just analyze them statistically so that we can say okay this is really um this is really an association and uh so um the registry um the page registry was essential for uh for the
Treatment uh now because we we saw that the risk for thrombolic events is higher if the LDH is high in clinical symptoms there though so these are now um the indicators for starting treatment and so on and um we have now um more more treatments and in the future we have to
Decide which treatment will be the best for which patient and so uh this uh registry are um Norms important and um they are I think we have um fast um fast results for patient care in in this context and so I think it’s really important um just to uh to be
Active in in this way yeah yeah and it’s probably the most important study for us patients because it just it’s over a long long period of time data will be collected of many many patients globally and uh they’re analyzed in different ways to answer different questions so it’s really
Important and so it’s not just I think important is to know these are not just uh some scientific questions these are really questions for daily life uh with with p& or plastic anemia so um regarding to pregnancy it’s regarding quality of life um it’s regarding risk
For drum events so that um I think um it’s it’s really important thanks any questions on that maybe okay so I think if there are no further comments we can maybe close the session and so I would like to thanks all of you for having been here and also
Dr Osman and to alexnder thank you very much thank you all thank you bye bye thank you by bye [Applause] Bye [Applause] [Applause] oh